Finally, Newspapers Are Starting to Publish the ME/CFS Story

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Getting much needed attention to the plight of ME sufferers, and the issue of it being a physiological illness, has been an uphill battle. Julie Rehmeyer has written a first-person article that should get a lot of conversations started. (At least we can hope!) Please click on “Washington Post” to link to the article.

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Julie Rehmeyer’s article about her own experience with ME/CFS, originally, and specially written for the Washington Post, has been picked up by the Chicago Tribune.

Julie Rehmeyer, science and math writer and contributing writer at Discover Julie Rehmeyer, science and math writer and contributing writer at Discover

Rehmeyer is a math and science writer in Santa Fe, N.M.  A version of this article appeared originally at the science writers’ blog The Last Word on Nothing.

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Let’s Play Catch-Up!

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Since the last time I blogged about myself, a lot of things have happened. I have been introduced to many new doctors and a few new tests. Thanks to Dr. Vera at NOVA, I am on some new medicines for ME and Fibromyalgia (which have practically gotten rid of my brain fog!) We are still experimenting with dosages to see if more improvement will be possible. (Fingers crossed!)

A dear friend who needs a place to stay will be moving in shortly. Lots of planning and packing going on between the two of us. Living in Florida will take some getting used to on her part. It took me two years to feel like I belonged here.

She will be arriving on Thanksgiving. The holidays will be particularly meaningful as we share the joy of being a family, as I consider her a sister. Very excited! (Also, can’t wait for her to see my jewelry studio!)

And speaking of jewelry…I have been keeping myself busy, designing and repairing pieces on commission. Here are pictures of some of my work…

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New pair of earrings made to replace old earring with missing partner. Used Swarovski crystal, freshwater pearls and gold-filled chain.

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Necklace made for opal and blue topaz pendant, supplied by client. My plan was to honor the pendant, not overwhelm it. Used agate, sterling silver beads, Japanese seed beads and Swarovski crystals. The client was trilled with the results and has ordered earrings to match.

 More pictures to come in the future.

As for my Kraftycat Creations Website, I am in the process of revamping – adding new, exciting products! This is a wonderful part of my life. I consider it therapy for a happier, healthier Fern. The “new and improved” Kraftycat Jewelry and Creations will be ready to view shortly.

She Gives Hope To Other ME/CFS Patients

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A little bit of hope goes a long way. And Carol E. Head is the picture of hope.

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Below is a video Carol E. Head, President and CEO of Solve ME/CFS Initiative.

Carol E. Head, President and CEO of Solve ME/CFS Initiative Carol E. Head, President and CEO of Solve ME/CFS Initiative

She talks about her “personal walk” with ME/CFS, describing how she became afflicted with the illness.

She had goals and plans for her life when she was a young woman who had just graduated from Management School at Stanford University.

Then, she got the flu.  And you can guess what happened after that.

After going from doctor to doctor to doctor, she did seek alternative therapists, and, over the course of many years, started to see improvement, to the point where she was able to go back to work.

Her story, told briefly in this video, is reminiscent of most of all sufferers with M.E.

It’s not a long story, but you will be able to empathize with her, and take hope that it is possible…

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Sunday Silliness

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I will admit that I am not up on most of what goes on in “Viral World”. This morning, while responding to a question submitted by a fellow ME/CFS sufferer, I decided to visit her facebook page. The first thing I looked at was:

Well, anything with cats gets my interest, but I was curious about where the music came from. After some research, I found out about Eduard Khil, known as the Trololo Man. Here is the original video:

What I also found was a plethora of other takes on his unique styling. All I found vastly amusing. Some I have included below.

This next one is a tribute to the singer, as he passed away in 2012. I am sure he is smiling still at the happiness his music has inspired. I guess you can say this little blog is my tribute to Mr. Khil, who certainly made me smile, and even laugh! 😀

Trololo even gave “Lord of the Rings” a chuckle factor:

And if you do not watch this “Harry Potter” Trololo tribute, you are doing yourself a disservice (go for it and pay close attention to the facial expressions in this cut, as Voldemort sings.)

Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis

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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) …

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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

 

Dear world,

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

 

Put Your Best Face Forward-The One YOU Want to Show.

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There is a lot of buzz around the following video by Colbie Caillat. And it is a good video, decrying one of the messages taught to girls and women from a young age – that you are expected to look “your best” when facing the world.

I always had eye makeup and lipstick on – until getting Bells Palsy 15 years ago. After recovering as much as I would, I decided to only wear mascara and lipstick.

Now, as I battle M.E., I have learned that short hair is very freeing – 30 minutes extra rest-time is very important. Recently, I have done away with mascara also. The lipstick? Well, I like color and it takes one minute to put on.

This I do for me. And that is the only reason to “put on your face” – for yourself, if you want to!

Enjoy the video! 🙂

 

Final Stages

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A dear friend says goodbye…

Documenting M.E.

Dear Friends and Family,

This is a post I’ve been putting off for quite awhile. But I no longer have the luxury of putting it off anymore – not if I want it to get written. My personal journey with ME is near its end. A long time ago, after months of deliberation, I made the decision that if my digestive issues ever got to the point where I could no longer get or keep food down naturally, I would not seek life sustaining measures, but would allow the illness to play itself out naturally. I am at that point, and have been for awhile now.

Let me preface this by saying that none of this is a judgment on those severe ME patients who choose to take advantage of technology like nasogastric tubes, hydration IVs, etc in order to remain alive as long as possible. I believe this is…

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“Justina’s Law” Introduced in Congress – Is This the Beginning of the End for Voodoo Medicine?

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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.

A Word or Two on Autism

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My daughter has an Autism Spectrum Disorder, along with depression and OCD. We did not learn until she was 21 about the Autism. (Thank you Reader’s Digest for the article that spelled it out for me.) By then, after being unsuccessfully treated for over ten years for anxiety and depression, she felt hopeless. As she stated to me, “None of the meds I have tried ever worked. Nothing changes and I will never be normal.”

Well she was right. She will never be “normal” (whatever that is), but she will always be herself! And that is perfect to me. I wish she could understand how much I love her and love herself just as much.

We work together with a therapist on life skills, and I believe I see glimpses of forward movement – or what the therapist and I see as such. To my daughter, it takes a lot of energy and is play-acting. It does not come naturally to her and, in most cases, she would be just as happy not to change.

Social skills? She has “friends” all over the world via the internet. What is so important about going out and interacting with others? She hates noise, hates to be touched and has no interest in any relationships.

 

The world is seen as black or white, good or bad. “Why are teenagers so stupid about life? I do not understand the chances they take and would never do those things.” As her mother, I can attest to the fact that I never worried about her drinking, trying the latest bad fad or lying to me about where she had been.

I feel lucky in the fact we are very comfortable with each other, warts and all. With my M.E., we even share some sensory problems that effect both illnesses. She likes that I can understand some of what she goes through and it makes our living together easier.

Most evenings you will find us in the family room, each with a laptop. I will share recipes, cat pictures and other items of mutual interest by turning my laptop to face her. She will share like items by sending me the link via Skype. Then she will turn in my direction and watch my reaction. Usually I have a comment or two. Sometimes I laugh out loud, maybe even “snort”. This will make her shake her head and smile. She tells me she is “laughing at my laugh”, not at what is on the screen. If it makes her “laugh”, I do not care how silly I act – it is a special moment – one of many that we share.