Just to get your minds off “The Donald” and all the usual political stuff… I present an update on McCubbins (see my previous blog “Meow is the Time…” )
Meet Deez Nuts -a high school boy in Iowa named Brady Olson. He is sharing his ticket with Limberbutt.
From USA Today
Unconventional presidential hopeful Limberbutt McCubbins is throwing his tail in the race. He is 36 cat years old and, if elected, he would be the first neutered president (this could be a good thing.)
Medical Marijuana- finally legalized in Florida after tons of red tape (Republican red). But when will it be available? And for whom? One may never know. More on this by Sunshinebright!
Medical marijuana has been one of the most contentious topics in the news these past couple of years.
State legislators can pass laws regarding “legalizing” this plant, but our federal government still considers it an illegal drug, and possession and/or use of it can still cause arrest, trials in court, and jail time for those persons caught in this illegal act by federal authorities.
In Florida, the legislature passed a bill in 2014, legalizing medical marijuana, in the hopes of avoiding a state constitutional amendment in the next election in 2016. There are contents in the bill that caused a legal battle, setting back the activation of the new law. (Please see my other posts about Florida medical marijuana here and here and here.)
Splashed over many headlines today, May 28th, 2015, is the announcement that Florida Administrative Hearings Judge Watkins, rejected claims by an Orange…
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With the optimism I felt upon hearing the outcome of the IOM report this week, it is sad to learn the report is being shut out in the UK.
While the ME community is absorbing the finer details of the recently published report by the US’s Institute of Medicine (IOM), the silence surrounding the IOM report in the UK media is almost deafening. Whatever one’s opinion regarding the finished product, this is a significant study produced by a major and respected United States organisation, part of the Unites States National Academies, concerning a disease that affects between 100,000 and 250,000 UK citizens. There has been extensive coverage in various media outlets in the US but reporting in the UK has been near to non-existent. Call me a cynic but had the IOM study concluded ME was a predominantly psychological condition and renamed it ‘Cannot be bothered to exercise syndrome’, I have no doubt, following heavy promotion by the Science Media Centre (SMC) and the likes of Wessely and White, the report would have been plastered all over the British…
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There are millions of people in this world who suffer from Myalgic Encephalomyelitis. Many of them cannot leave their beds, as this chronic illness takes away the ability to function in the everyday world. Never heard of M.E.? Small wonder, as many in the medical and political communities refuse to believe in it or champion it.
My Story -Part I:
I have been “living the M.E. life” for over 20 years, with a big decline in my health the past two.
Initially, much of the first 15 years were spent with some interruption in my day-to-day lifestyle. I suffered migraines, fatigue, body aches and many of the other symptoms associated with M.E. There were times my body rebelled with a painful flare-up.
In the beginning, I would have long remission periods. These gradually became shorter and more infrequent, eventually stopping altogether.
I “doctor hopped” for years, receiving much abuse and incorrect treatment along the way. I never knew exactly what was going on until the correct diagnosis from a doctor whom I trusted about 4 years ago. The rheumatologist who gave me the diagnosis also stated that she could not help me and advised me to find a doctor who could. This, unfortunately, is like finding a needle in a haystack.
If you look up ME/CFS doctors in the United States (and the rest of the world), you will find a scattering of names. One name, Dr. Nancy Klimas, stood out to me. Her office was in South Florida and I lived in South Florida. Bingo!
Of course, that was too easy. Her clinic was not taking any new patients. It was suggested I try calling again in a few weeks. Weeks turned into years, with no change in the response I received.
In the meantime, I found another Rheumatologist who was very supportive, although she had no real knowledge of the illness. But we made a team, together trying to figure out what would work to help my multiplying symptoms. And we have made some progress.
The biggest issue facing me was a way to keep my job – a necessity as I am the breadwinner for my autistic daughter and myself.
When it got to the point that brain fog was impacting on even the smallest task, my doctor came up with using Adderall to stay focused. It turned out to be the difference between not being able to put two words together (never mind remembering how to spell them) and being able to manage doing my job., (Albeit much slower than before, as I need to concentrate harder and check my work at least two times for any errors.) We also found a mix of meds to somewhat diminish the increased pain, spasms and twitching I am now dealing with.
Good news came in February, when it was announced the Neuro-Immune Institute in Miami (which Dr. Klimas started) was adding new clinicians. I called and my name was put on a waiting list. After waiting what seemed like a long three months, they contacted me. The excitement and relief I felt at getting an appointment with Dr. Vera-Nunoz was palatable. It felt like winning the lottery.
To be continued…
From Phoenix Rising:
Andrew Gladman brings coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients (names have been changed for the sake of privacy) …
It leads to a loss of independence and leads to a life of a lot of uncertainty. I had worked for 10 years while ill, and am now trying to find my way in regards to supporting myself and applying for disability NOT via Social Security! My life is in limbo, but luckily I have had family to fall back onto to take me in. –GG
How lonely it is. –Sean
I think the worst things are losing your sense of identity, having to rely on others for basic help, but mostly not being able to produce energy on demand like the rest of the world and feeling resentful/jealous/fearful and emotions that you don’t want to feel. You just want to be healthy and participate in life as you knew it, but you can’t. There are so many more “Worst parts” that I don’t really know where to even begin! –Gingergrrl43
That it is an excruciatingly painful living death. –Min
What I would like the world to know about living with severe ME/CFS is that it comes with a lot of losses. The one that has the greatest impact on me personally is the loss of my dignity.
Suffering from a severe form of a chronic, debilitating disease for decades comes with many losses such as physical functionality, social activities, friends and even family members. It is painful and totally life altering. For me, specifically, I mourn my dignity.
Other devastating diseases come with the worldwide understanding of how impactful the disease really is. For example, in my community, when a woman recently was suffering with cancer, the community organized daily hot meals for her and her family as well as daily visits. She was being hailed as a hero for being so strong, dealing with such devastation.
I will never have the chance to be heroic.
When I first fell off the social grid, I received some phone calls to see how I was doing. After hearing that I suffered from Chronic Fatigue Syndrome, those calls quickly dwindled down. This is because there is no understanding of the seriousness and devastation of this disease. The handful of people who still do call, tell me to go out because it’s a nice sunny day … as if it is a choice that I can make. I have been advised countless times to go for counseling as if it is just a mood thing. As far as my community is concerned, I am perceived as one who has been in a deep depression for 11 years and has become a hermit by choice!
Even though I have been suffering physically for so long, it is this loss of dignity that has been the most painful for me. –Gabby: 59 year old wife, mother and grandmother. I have been ill and disabled from work with ME for 11 years, fluctuating between severely and moderately affected.
People need to know about LOSS …
It’s as if a pause button has been pushed and some-one has forgotten to re-start it. The lives we wanted to lead have been lost to us. Yet I have lost less than those who are severe.
They need to know about PAIN, and GRIEF, and the PAIN OF GRIEF, and the GRIEF OF PAIN.
For those who are severe, they are caught in an endless cycle from which there appears no escape.
And they need to know how to CARE – not by constantly talking about the illness, but by finding little ways to show caring. A card, a flower, an email or Tweet … something that doesn’t require much response but shows that the individual is not FORGOTTEN! –Keela Too, moderate ME/CFS
The message I would like people to hear is that this disease should be avoidable and curable. It isn’t and it could happen to you next.
For the past 30 years I’ve had a disease that has had little research funding and when it has been funded it has often been siphoned off into other areas or gone to the wrong team.
We patients have had no control over this. Something rotten exists in the government bodies that control funding and the independent agencies.
If money had been allocated to this disease and to the right people then I don’t think there would be severely affected people with ME. –ukxmrv
Dear healthy people with busy lives.
I’d like you to know that I did nothing to encourage this illness upon myself.
To be clear, I did not ask for, encourage, give in to a mental desire for, choose for the sake of attention seeking to be housebound and isolated unable to do much of anything.
If you believe ME is not real I can assure you your belief is in error and probably derived with very little effort at uncovering the facts.
Nothing would make me happier than to be able to contribute what talents and skills I possessed to my family and my community. –Snowdrop, slow onset ME that has been steadily worsening for the past 9 years or so although I had experienced less severe symptoms for decades prior.
The one thing I would like people to know about ME is there nothing you can do about it once you get it. Nobody is going to like me for saying this.
Yes you can take medications, supplements, attempt to keep your body and mind in a healthy place, pray, scream, go from doctor to doctor searching after that bit of knowledge or that latest study; but unless there is a real cure for this horrible illness your body will have to deal with it to the best of its ability.
If you can find something to keep your body strong, that is good but keep looking because our bodies needs change and you are only treating symptoms. Accept it and learn to live your life from your house, your chair, your bed.
I’ve had ME 26 years and, being a former expeditor, I’m the type that looks for answers; something can always be done. My conclusion is that without a true cure we might as well just accept this disease and live the best life we can.
Unless the globe realizes that this is zapping incredible talent and costing money that could bankrupt governments and that people in power can get this disease themselves, we will never solve this. –PNR2008
I would like the world to know that this can happen to anyone, at any time …
The public has been told by the media and by the medical profession (excluding some exceptional doctors and researchers who specialize in ME and are usually ostracized by their peers as a result) that ME is not real, not serious, and something that the weak-minded somehow choose to develop or lack the will power to snap out of.
As you read this, please don’t make the mistake of thinking that this could not happen to you. I never thought this would happen to me.
Please open your eyes and your minds to see our reality.
Please try to understand our loss.
Please don’t knock what you don’t understand. We would not do that to you.
ME has cost me my career, my social life, my hobbies, and friendships. I hope for a better life. You could support that hope for all of those with ME.-Daisybell
Just for one week only, stay in your bed, and crawl on the floor to go to the bathroom.
Then we’ll talk. –Dr.Patient, Severe ME sufferer
Severe ME is an endless private torture of unbearable physical symptoms. For me *holding on* to my life and enduring the unbearable symptoms was the hardest thing I have ever had to do in my life. I understand how people with ME take their lives. It takes everything you have to get through severe ME. I am truthfully scarred by it, mentally and spiritually.
I fear going back to severe, I’m not sure I could do it a second time. I have nothing left. I used every ounce of will I had the first time round. I rest all afternoon and evening – I still live mainly in my bedroom, in bed 12 years on.
My hope is that one day no one will ever have to endure severe ME ever again. –Rosie26
With severe ME there are small margins, a huge risk of deterioration, and it makes medical treatment difficult due to side effects. Emergency care is a big risk, it’s not adjusted/adapted to severe ME and there’s very little acknowledgement of it among doctors and carers. –Lorene, 45 years old and I’ve had ME since childhood. Since age 25 it’s been moderate/severe and since two years ago it’s been severe, I’m bedbound/housebound.
ME doesn’t kill you, but it squeezes every drop of life from you. –Ecoclimber
ME is not only worse than you imagine, it is worse than you can imagine.-Forbin
I’d like people to know of the abuses we withstand, particularly from the medical community. It’s not “misdiagnosis” or “under treatment”. It’s abuse due to overwhelming ignorance: ignorance which is inexcusable and CAN be corrected if enough people give a damn.
Short of lie detector tests in every medical office, I don’t know what we have to do in order that we be believed for our suffering. –SD Sue
ME is a disease like no other. We’re told for most disease that we need to strive and push ourselves to get fit and healthy once more. ME doesn’t abide by these rules. Over time you come to learn to live an uneasy truce with the disease, to no longer fight it and succumb at the worst times in the hopes of better days to come. Nothing else in my life has tested me this much and given such little ground in the process. –Andrew
This disease has wrecked my health, but it is society that has wrecked my life. The disease has confined me to the house, but a culture of cruelty has confined me to poverty and isolation. Illness stops me from growing food, while official gatekeepers tell me I don’t deserve any. Illness means I still feel cold under all the blankets, while public policy says I don’t need heat.
It wasn’t disease that physically and emotionally abandoned me, forced me into bankruptcy, sued to take my house, claimed I just need exercise and therapy, and constantly forces me to prove I’m poor and sick. It was people who did all that.
In the US and many other “civilized” societies it is a Crime Against Capitalists to be permanently sick. It’s acceptable to be sick for a week. After that, we’re depriving The Economy of a chance to exploit our labor and enrich Our Dear Leaders and their wealthy handlers.
This situation will not change until many, many more people, both sick and well, come to understand what modern social institutions are really about and who they serve. Here’s a hint: they aren’t here to serve working people.
The horrendous, barbaric treatment we receive is not unique to this illness, and the attitudes we experience will not change if the puzzle of ME is solved. Patients of the next mysterious, potentially expensive illness will have to go through this misery as well. AIDS patients were not the first group of sick people to be brutalized, insulted and ostracized, and we won’t be the last.
When a reporter asked Mahatma Gandhi what he thought of western civilization, his response was, “I think it would be a good idea”. –Jim, 58
If you haven’t suffered, you can’t understand the exhaustion and the frustration over the changes in your life, personality, circumstances. –Karen
It has been awhile since anything new came out by Mr Yankovic, but it was well worth the wait. (And if this means he will be coming around to do shows again – I’m there! 🙂 Saw a performance of his several years ago and I still laugh thinking about it!)
Hope you enjoy!
And here is a bonus – a second video!
I think I just found my next cosplay costume (memo to self – get to Walmart.)
Can you stand a third? (I can 😀 This one may even be the best – yeah I saved it for last! )
This is a powerful video.
Reblogged from “Onward Through the Fog”
Posted: 30 Jun 2014 06:45 PM PDT
|Justina’s father carries her home after her 16-month incarceration|
The saying that politics makes strange bedfellows has gained a new dimension today. In a rare bipartisan effort, two staunchly conservative congressmen, Michele Bachmann and Tom Marino, have joined forces with liberals Karen Bass and Jim McDermott to propose “Justina’s Law.”
Justina’s Law would bar federal funding of any institution that uses wards of the state for medical experimentation. On the surface, this appears to be a law fraught with loopholes. It is possible that mental hospitals could justify forced psychiatric treatment on the grounds that it is usual and customary.
Usual and customary treatment for all mental illnesses (other than schizophrenia and psychosis) consists of therapy (e.g. CBT), sedatives, and/or antidepressants. These are not actually treatments, because there are no objective tests for mental disorders. That is because the majority of mental disorders are not illnesses; they are simply reflections of social conventions and cultural mores of the time. Given the lack of any scientific evidence for the existence of somatoform disorder – an antiquated diagnosis left over from Freudian psychiatry – it would be a stretch to claim that its treatment is anything but experimental.
The treatment Justina was given throughout her stay as a ward of the state was not approved by Justina’s parents, who have consistently maintained that the state of Massachusetts experimented on their daughter. Justina’s previous diagnosis of mitochondrial disease (an inherited condition also suffered by her sister) was disputed by a neurologist at Boston Children’s Hospital. The neurologist re-diagnosed Justina with “somatoform disorder.” Her parents were then accused of “medicalizing” her illness. Over the next year, Justina was refused medication for mitochondrial disease, and placed in a locked mental ward. Eventually, the state moved her to foster care. During the 16 months she was a ward of the state, Justina’s condition deteriorated until she could no longer walk or stand.
Justina’s Law, if passed, could have profound ramifications for the ME/CFS community. Hundreds of children with ME/CFS have been taken from their homes on the basis of psychiatric diagnoses that are just as unsubstantial as somatoform disorder. This law would give legal grounds to parents suing to get their children back. It might even help get some of these pseudo-psychiatric “diagnoses” relegated to the dustbin of history, which is where they belong.
Please ask your representatives to support H.R. 4989, “Justina’s Law.”
Find your representatives here.
You may use this letter as a template.
Please support H. R. 4989, “Justina’s Law.” Justina Pelletier was incarcerated by the state of Massachusetts for over a year based on a psychiatric diagnosis for which there is not one shred of scientific evidence (somatoform disorder). As a result, Justina’s disease (mitochondrial disease, a rare inherited disorder) has progressed, and she is no longer able to walk. Justina is not the only child to have suffered this fate. In 2009, Ryan Baldwin, a boy with myalgic encephalomyelitis (aka chronic fatigue syndrome) was taken away from his family in North Carolina and placed in foster care, where he grew steadily worse.
Please prevent more cases like Justina’s and Ryan’s. Support “Justina’s Law.”
Reps. Bachmann, Bass, Marino, and McDermott Introduce “Justina’s Law”
Michele Bachmann, Jun 27, 2014
Washington, D.C. — Rep. Michele Bachmann (R-MN) joined with Reps. Karen Bass (D-CA), Tom Marino (R-PA), and Jim McDermott (D-WA), the co-chairs of the Foster Youth Caucus, to introduce bipartisan legislation that prohibits federal funding for medical experimentation on a ward of the State.
The bill, H.R. 4989, nicknamed “Justina’s Law”, is a response to the recent case of 16-year-old Justina Pelletier, who was finally released from Boston Children’s Hospital (BCH) back to the care of her family after a 16-month custody battle between the Commonwealth of Massachusetts and Justina’s parents.
BCH and many other hospitals have an internal policy that allows for children who are deemed “wards of the State”, including foster children, to receive treatment or be involved in research that presents great risk even if there is no prospect of any benefit to the child.
“Whether it is one child or thousands, it is our duty to guarantee that children are kept safe from harm while in the custody of their respective states. Not all these children have families like the Pelletiers willing or able to advocate on their behalf. Sixteen months ago, Justina was a figure skater. Today, she cannot stand, sit, or walk on her own. It is unconscionable what happened to Justina, and we must do all we can to prevent it from ever happening again. Removing federal funding from such experimentation is an important first step.” – Rep. Michele Bachmann (MN-06)
“Children need to be loved and cared for, not treated as something to be experimented on. Foster children are particularly vulnerable because they may not have parents to advocate for them. This bill will make it clear that children are blessings, not guinea pigs.” – Rep. Karen Bass (CA-37)
“The bonds between children and parents is sacred. The closeness and level of intimate understanding between them transcends our societal constructs. In Justina’s case, she was kept from her loved ones and essentially detained by the hospital and the state. She was lucky to have parents that fought for her and leveraged the support of the media and public officials. Yet too many children do not have parents to speak for them and look out for their health and best interests during times of physical and emotional vulnerability. That fact saddens me. It would sadden any person who knows the power of love and affection. That is why I am proud to support Reps. Bachmann, Bass, and McDermott on this legislation because no child, with parents or not, should be subject to medical experimentation under the legal designation as ward of the state.” – Rep. Tom Marino (PA-10)
“The strength and bravery that Justina Pelletier and her family have shown in the face of incredible hardship is a guidestar for us all. We must act to protect and cherish children in the care of a state and make sure that they are not the subject of risky medical experimentation. I look forward to working with Reps Bachman, Bass, Marino and countless other colleagues from both sides of the aisle to pass Justina’s law as quickly as possible.” – Rep. Jim McDermott (WA-07)
Click here to view the full text of H.R. 4989.