all in your perspective....

I am a shit magnet. Ask anyone who knows me and they will tell you its true. If anything can go wrong it will, at the most inopportune time with the least amount of warning. If something isn't happening directly to me, its effecting someone I dearly love. It has become something of an embarrassment, which sounds completely ridiculous but assuredly true. I feel shame for some reason, as if it was some kind of personal failing on my part that negative events have occurred. Like a child who believes in magical thinking, I have wondered what I am doing wrong, was it something I thought, something I did or didn't do, was it somehow my fault?

When I first began this blog, I wrote a post about Turning the Prism. I forgot to do that. I forgot to look at things from a new perspective, to change my point of view. Today I was walking by the computer which uses a screen saver slide show of all the pictures on the computer; I am always surprised by what pops up. Today was a beautiful picture of my dog buddy who we lost a few years back. I smiled and was deeply touched to see him albeit it digitally. It hit me then that it didn't hurt so bad to see him. I felt this sweet sorrow but not that pressure, can't swallow pain in my chest. Buddy was a great but challenging companion. He was a beautiful black lab with shiny fur, regal bearing and a bit of the devil in him. Seeing him today reminded me that the love never dies and has indeed become sweeter and more poignant. Even the times he aggravated me to no end, somehow have become more humorous when viewed through the lens of time. So maybe I needed to re-look at my self-imposed title of "Shit magnet", maybe I needed to see my life through a new lens.

I am not skilled enough to look at almost losing my daughter last summer from a different point of view however. It was a horrific event that causes me to hold my breath, feel my chest tighten and my stomach clench to this very day. It is still surreal to me that it all happened, like a nightmare that still effects everything we do everyday. How does Brianna face everyday given what she has been through? How did she go to college 11 days after coming home from the ICU? How did she achieve very respectable grades given the fact her brain was on hold for 17 days while in a coma? How does she push ahead with her life, knowing she will be facing her disease again in another battle? I talked to a psychiatrist from the military, an expert of PTSD (post traumatic stress disorder) who worked with Veteran's from Iraq and Afghanistan about ways to help her cope with her nightmares and anxiety. He said, she was in a terrible position because unlike a war veteran who after being discharged won't be in a combat zone again, Brianna has to still interact with the very places that have caused her injury for the rest of her life. How does she do that? She must have found ways to cope, to compartmentalize, to move forward, to turn the prism and see something beyond what I can imagine. Being happy has become mission for her, not something that she will eventually become, but something she is actively choosing in her life. Maybe that's the gift, the gift that has come from her being born with this disease. Turn the prism to see something ahead of you and move on from what was behind you. Bring with you the good things you have learned and let go of the rest.

Almost losing Brianna, having my mother become acutely ill, losing my father, having my niece struggle with seizures, watching my brother struggle with addiction, are just a few of the past few years struggles. Some are issues that have always been there but became worse and others were life altering. I can see some of the gifts that have come from these events very clearly. My family has become closer, more connected than ever before. Maybe we always were close but it had never been tested in such a meaningful way. I learned its okay to ask for help when you can't do it alone anymore. I have come to know that I am not somehow diminished because I needed help to cope with something. Being strong means knowing when to call in reinforcement and the gift was that when I asked, my family and friends responded. Even friends of friends and strangers became angelic beings in our lives.

Every event in my life has prepared me to survive another event, I have come to know that for sure. That has been an amazing gift to me. Looking at things from the benefit of time has given me perspicacity. My appendix became infected before we left for our 25 wedding anniversary vacation, when it might have burst while we were in California. I have been like what the hell, I am a shit magnet! When is it going to end? Never. That's the truth, so I better embrace it. Nothing is permanent, nothing is guaranteed, forever doesn't exist. Change is the only thing you can count on to always be there. To be honest, I hate change. Change always seems to be negative, but in fact my infected appendix being removed is a very good thing! timing not withstanding.

My father dying has devastated me and my family, I want him back everyday. Except he was suffering, was sick and he didn't want that anymore. He chose when he had had enough, he said his good bye's to his doctor and three weeks later he was gone. That is a change I could have done without, but not at the cost of his well-being. I am blessed to have had him for 45 years, I know I was loved and he knew I loved him. He was surrounded by love, affection and when taking his last breath he extended his clenched hands up towards the ceiling in a movement that left no doubt that my father was reaching for something beyond our comprehension. It was a peaceful death. Our family was tested and we amazed even ourselves. That is the gift, the lens through which I am choosing to look at losing my dad. Maybe that's the point, it is all in our perspective. We can swim with the tides of change, maneuver around the boulders and roadblocks. It will still hurt like hell when we ram against those rough edges, but at least we are moving forward. We can also sink, try to swim against the tide, be a strong unwieldy piece of steel or to quote my son Brett, we can "be water" It is really all in your perspective.

Touching Heaven

Beautiful trip to White Mountains of New Hampshire, Thank you Family!

a life well lived

On Thursday, my father died. Those three words, my father died, are so unreal to me. How could he be gone? How could he not be just a phone call away? My head and heart just cannot take it in.

My dad was not a perfect man but he was an amazingly good man. Kind, loyal and trustworthy, devoted to his family and seriously hard-working. Arthur was the kind of man who in his late 70's refused to work the day shift at stop-n-shop with all those old people who did nothing but talk about their bowels! He liked the energy of the young people who worked nights. His wake was an amazing turn out of friends past and present, family members needing to reconnect and even a wonderful young woman who flew from California to pay her respects. It is hard to imagine that a life that was so full is condensed into the words of this brief obituary. He so generously left us the details in his own writing and we filled in the rest.

Agawam- Arthur Joseph Forgues, 86, died peacefully at home, Thursday, August 5, under the care and comfort of his loving family. Born February 26, 1924 in Springfield MA, Arthur was the son of the late Eva St. Germaine and Alphonse Leopold ...Forgues. He attended the old Springfield Technical High School. Arthur proudly served in the 3rd division of the United States Marine Corp. from 1942- 1946, fighting in the Asiatic-Pacific campaign in the battles for Guam and Saipan. He was honorably discharged after serving as a Staff Sergeant in the Marine's military police. He was employed at E.J. Pinney Construction and Home Spun Electrotype in New York for the Daily News, NY Times,and finally the Wall Street Journal in Springfield. Arthur worked as an Engineer for Amtrak and Conrail until his retirement in 1985. His last job was an associate at Stop n' Shop in Agawam, a job he really loved. Arthur had a profound love for his family and was a longtime communicant at Sacred Heart Church in Feeding Hills. Arthur leaves his beloved wife of 54 years, Lucille (Pierce) , and his four children; Thomas L. Forgues and his wife Joyce, Timothy J. Forgues, Theresa A. Couture and her husband Paul, Tina Walker and her partner Antonio Simmons, one sister Camille Marie Forgues of Longmeadow, and many nieces and nephews. He was a proud Papa to his grandchildren, Joseph, Amber, Aimee, Gina, Renee, Stephanie, and Shannon, Brett, Brianna, Whitney, Daniel, and Alexandra , also to his 15 great-grandchildren. Arthur often said that outside of his family, serving as a Marine was one of the proudest things he had ever done. The family would like to extend their thanks to Dr. Philip Glynn, Noble Visiting Nurse & Hospice Services, and Great to be Home Care, Inc. for all their care and support during this difficult time. Arthur will be missed by one and all who knew him.Visiting hours will be held Sunday, August 8, 2010 from 3-7 at Agawam Funeral Home, Main Street in Agawam, MA. Service will be held Monday at 10 a.m. Followed by service at the Veteran's Cemetery.Memorial contribution to Noble Visiting Nurse & Hospice Services.

A few days before he passed, my mother and him were talking about what happens to our energy when we pass. Rather an unusual concept for their Christian beliefs, but it was her way of telling him the end was coming. She stated she felt that she might come back some day as a deer or something like that. She said what do you think you will come back as, and he answered thoughtfully, " I just want to come back as myself"

Those words have been replayed in my head over and over. He didn't want to be anything more or less, just happy being who he was. What an amazing lesson for me. To learn to be accepting and happy with who I am.

I love you papa bear,

Your loving daughter,
The Hammer

the BIG picture about Mitochondria

Fascinating info that changes the landscape about what we think we know.

There exists a connection between this tiny but powerful organelle...and life as we know and understand it.

The mitochondria have long been understood to be the "powerhouse of the cell" but the relationship between mitochondrial function and aging, and diseases of aging, is beginning to be uncovered.

The evidence is convincing, as profiled by three leaders in the field of mitochondrial medicine.
Dr. Christoph Westphal, CEO and co-founder of Sirtris Pharma, discusses the relationship between mitochondrial disease and more common diseases, such as diabetes, Parkinson's, Alzheimer's, and cancer.

http://www.mitoaction.org/podcasts/mitochondria-the-big-picture

Prajna Chronicle: Jamie Oliver speech! so amazing

Prajna Chronicle: Jamie Oliver speech! so amazing

Jamie Oliver speech! so amazing

Jamie Oliver, a fantastic chef is bringing his food revolution to America. This is his award speech from TED. So inspiring to remember that most of our deadly diseases are treatable. I found cooking half way through my life and hope that eating and cooking healthy foods will inspire my children, friends and family to eat well and healthy. Environmental toxins in our food have been linked to some of our most devastating illnesses. I admire Jamie Oliver's mission. Let me know your thoughts

http://www.jamieoliver.com/news/jamie-wins-prestigious-ted-prize

Tips on Advocating

Just when I think I am getting a firm handle on my life, another medical
issue hits and knocks me off my feet. I can't seem to regain or maintain any
balance in my life!

When you and/or your child learn about the diagnosis of Mitochondrial Disease, it can be extremely frightening. As time goes on you will begin to develop some perspective and distance from the initial shock of your diagnosis. Bills will need to be paid, laundry done, birthday's celebrated, holidays respected - in other words life will go on. For patients or parents who are dealing with this for the first time this maybe hard to imagine but ask a "Mito" veteran and assuredly it is true. This is when the questions about, "how do I live with Mito" begin to get asked. "How do I get off this roller coaster called my life?" To some extent, the ups and downs can't be avoided,

but there are some things you can do to gain some control and lessen the disruptions caused by these ups and downs. It may take some work but it will be worth it.

The following three strategies can be effective in reducing the degree of disruption caused by the ups and downs of living with mitochondrial disease. Even doing just one of them can allow you to step off the rollercoaster or at least control the brake pedal!

Control your information flow

Control your responses

Control the quality of your life

Control your information flow

Choose how you want or need to receive non-emergency medical information. This is usually never considered but can become essential in developing quality in your life. Here is one example about a parent but adults can relate to it as well:

A mother of three children affected by Mito disease begins her day, not your ordinary day, but a Mito-ordinary day! Just when she thinks things are under control and she is getting the hang of it, the phone rings and the neurologist tells her that the EKG (electrocardiogram-a tracing on paper that shows the electrical activity of the heart) from one her children's sleep studies showed an enlarged left ventricle. The mother has 101 questions, and the neurologist cannot answer 50 of the 101 questions. He tells her he will need to call the other doctors to gather more information, and suggests she make an appointment with a cardiologist. Mom agrees, hangs up the phone and understandably panics! Her thoughts become consumed by this new information. She calls her husband and tells him what has occurred and he asks her 102 questions. Anxiety and some panic takes over and they begin to research articles, they go on-line to search "enlarged left ventricle" and on it goes...crisis mode kicks in! She forgot about the shopping she was supposed to do, oops! She forgot the therapy appointment for one of the other kids, never made it to the bank, you get the idea. This is the roller coaster of mitochondrial disease.

This is how most of us receive our medical info but it doesn't have to be this way. Quite a few people were out of the loop in this verbal exchange: the primary doctor, the metabolic specialist, the cardiologist. By creating a rather formal method of information dissemination the parents can help to control the non-emergency ups and downs that go along with having a mitochondrial disease. The goal is to give your primary doctor the opportunity to become an expert along with you in your mitochondrial disease. When you become the case manager and the only expert in your care, the primary care doctor is left out of what is their primary role. They are busy, but there are many doctors who've really want to take the initiative and learn about mitochondrial disease but have felt out of the loop. If they receive information about your abnormal EKG reading from you, it leaves them at loose ends as to what they can do to help you.

They will always be one step behind where you need them to be. The medical system is extremely challenging to navigate: the more complex the care, the more difficult the navigation. One way to have your physician become a partner with you and your family is to schedule a meeting to talk to them (this can be on the phone or it can be face-to-face). Explain to your physician that you would like receive non-emergency medical information and results through them: the who, what, where, when and how. Have a pad of paper to write down what's being told to you. This will give you something to refer back to when questions come up. Sometimes as patients or parents, we become anxious about the information that's being given to us and we may only hear one quarter to one half of what the medical profession was telling us. Having something to refer back to will help to control any anxiety you may have over thoughts that sudden pop into your head.

In the case above, the pediatrician could have spoken with the neurologist, received a copy of the test results, and contacted the metabolic specialist about what cardiologist was working with the mitochondrial clinics. They then would make their recommendations to you based on a review of the information. This allows the pediatrician to become increasingly knowledgeable about mitochondrial disease and about your child specifically. Patients and parents do become the experts in their or their child's disease. BUT they shouldn't be the only expert.

To take this from a more altruistic point of view, when your doctor becomes more knowledgeable about one child, it expands the professional's knowledge about how mitochondrial disease can impact the lives of other children that might be in their practice. Having a little-known disease, like mitochondrial disease, can be a lonely place By involving more of the professionals that are involved in the care of you and/or your child you expand the circle of support that your family will receive and, like a pebble in a pond, the ripples will extend far beyond just you and your child. If you are fortunate to have a physician/pediatrician who is willing to get involved in the care of your child, encourage them to become empowered and to become a partner in care with you. If your physician/pediatrician is not willing to work in a partnership with you, you may need to consider finding one that will.

Control your responses

When you hear new information one of the things you can ask yourself, "is anything bad happening right now.", "is there anything I can do to fix this situation right now?"

If the answer is no, then go forward with your day. If you had planned to take your child to the park, go to the park. If you had plans to go to dinner with your husband, go to dinner with your husband. If you planned to go out with friends, by all means go. This is obviously not as easy as it sounds. Over time, you will get better at this. These very steps will help you ensure that you have quality in your life.

Long-term stress can have a tremendous consequence on your own personal health, on the health of your child and the health of your family unit. In the Mito world, never underestimate the effects that psychological stress can have on a person's fatigue and symptoms. You have a choice and must choose to not function in your everyday life as if every situation was a crisis.

Control your quality of life

Another strategy that may help is to teach yourself is how to compartmentalize through visualization new and overwhelming information. As an example, begin with closing your eyes, imagine a filing cabinet, see yourself pulling open the drawer of the filing cabinet and placing inside it a visual picture of this new information, see yourself closing the filing cabinet drawer. Then imagine a to-do list entitled filing cabinet. Imagine writing down what you put in that filing cabinet. This will give your mind control over the information you receive so it won't become engulfed by the information. Of course, at some point you will need to open that filing cabinet and take the information out, look at it, study it and see how it fits in with your family and see what you have to do with it and if there are things you can do to address it. There will be times when you will be able to cope with that new information and there will be times when it needs to be put aside to be coped with at a time that you are better able to deal effectively.