August 9, 2016 at 1:48 am (Uncategorized)
August 1, 2016 at 4:35 pm (Uncategorized)
July 25, 2016 at 3:34 pm (Uncategorized)
July 25, 2016 at 3:32 pm (Uncategorized)
Clyde was born in 1913. He was just a small town guy from a textile milling town in the Western Carolinas. He joined the Army National Guard and was essentially called up and Federalized after Pearl Harbor. My God Father was at Pearl Harbor, he was a Naval Doctor aboard a ship. Since he was small in stature, during the aftermath of the bombing- he was sent down into the ships deep hull to retrieve bodies. My God Father did not know Clyde, but it always amazes me to see the 6 degrees of separation in life. As one beloved was being bombed, another beloved was being called to the fight, only in another region- another fight.
It would be six degrees of separation that would eventually lead me into the fray of CFS, GWI, PTSD and Suicide.
Clyde spent most of his training at Fort Jackson in South Carolina. He went into The North Carolina Army National Guard. He said he was being deployed to help entertain the troops. He deployed to France, Germany, The Netherlands and Belgium. We don’t have too many official military records on hand, due to a fire that occurred at a military records storage facility in Missouri. Many valuable military records were lost in that fire.
101 Years after Clyde was born, in early 2014, I was packing up a familial house in North Carolina. We were moving everything to the West Coast. I came across many trunks and many folded flags in that house. The house was rich with Southern and Military history. I took great pride in being entrusted with this job, but soon I would find that it was a bittersweet task.
The basement of the house was dark and dimly lit. Boxes of clothes and belongings were up a steep flight of stairs. Neatly packed into boxes, were Clyde’s personal belongings- his clothes, his hat collection- which I wear proudly and his miscellaneous trinkets he brought home from World War II. One of those trinkets was a lovely jewelry box. I opened it to discover a type written note that said “here is the key to my trunk, HANDLE WITH CARE”.
Since Clyde was not the dramatic type, I took seriously the capital letters used in the note then set out to find “the trunk”. Down into the dark basement I went to find Clyde’s trunk. As I pulled the chain to turn the only light on, I was overwhelmed with how many trunks were stacked. Men who sent their trunks home to their families with detailed instructions. The amount of loss rushed over me as I leaned back on some ancient piece of junk that is my Huffy Bicycle. I startled as it fell over and for a moment- happy memories flowed forward instead of sadness. Those happy/sad memories are intertwined in my life and they flow back and forth like tides. I find it difficult to find my shoreline sometimes, but for the grace of God, have met great men and women who have managed to say or do something- that put my sails right.
The Huffy took me back to her original buy at a local used bike shop near Williams AFB. Air Force pilots trained there as well as pilots from all over the world. The Huffy was used as a “flight line bike”- meaning she was pedaled to and from the tarmac by pilots, who would hop off of her and saunter over to get into their planes. I made sure she had a basket on her, as that came handy for after flight activities. Like drinking and pedaling. Everyone thinks the AF is stuffy compared to the other branches. They are branded as “squeaky clean”. Believe me, they have just as much fun as any other branch, but they do it on the down low. In the larger planes, they also don’t have parachutes. So they know that on any given day it can be your day to die. “I’d rather be lucky than good” is the most common theme.
I had forgotten the Huffy had been shipped back here-to this house. I petted her gently and said, “I’ll never leave you again”. Talking to inanimate objects or gear is something I do. You learn to love your gear and take care of it, it becomes almost like an appendage.
I stepped away from the Huffy and found Clyde’s trunk, it was clearly marked in black bold letters with his name and unit number on it. The key he had left in the jewelry box opened the trunk. I started going through the trunk delicately. I found binoculars, a type writer, a trench coat, a hat, some ribbons, medals and other items. I quickly realized this was not the trunk “of an entertainer for the troops”. I found serious navigational devices, notebooks and other items and intuitively knew I was going to need to tread carefully. I removed all the items, searched them then moved onto the trunk itself. It took me an hour or so and a large lamp for better light, then only by accident, I found a hidden compartment sewn within the liner of the trunk. I pulled out an old musty envelope from its’ secret hiding place thinking I would find more of Clyde’s very very personal love letters to his gal back home. But what I found instead, was horrific.
There were 12-20 black and white photos. On the reverse side of each photo, was neatly typed notes of the date, the location and other details about the photos. In one such note Clyde said, “I am beneath the covers in my tent by which I type these notes. Please take great care to get these into the right hands so these may be officially documented”. Obviously, they were in my hands and I was shocked. Clyde had taken the pictures and developed them behind enemy lines under fear for his safety. The pictures were unlike any others I have ever seen. They had a raw feeling to them, as if Clyde knew exactly what their existence would mean. They are the most horrifying war pictures I’ve ever seen; they are so realistic you feel as if you are there. The pictures were of massacred Jews from around Europe lying in fields, in trenches and in a factory. According to Clyde these were “secret” locales not yet known about.
I went upstairs and I picked up Clyde’s folded American flag and I fell asleep with it in my arms that night. The flag was in her protective plastic case in a box, I couldn’t let her be shipped back in a box; she would stay and travel back with me. I know that what Clyde experienced was similar to what so many have experienced while serving this Country. Its’ a universal feeling of sadness spread out amongst an apparatus from child to mother to wives to fathers and grandparents to children to significant others. It is also an honor above all others. Its’ an apparatus you may not recognize unless you’ve been very close to that fire known as War and all of the tentacles that support it.
Our veterans that serve our great country do not deserve the way they have been treated as far as the medical issues that they have been bluntly hammered with. Furthermore, I don’t think that men and women go off to fight for the civilian population so that they could return home only to see the free they fought for suffering from a similar pattern of illness and distress. This is a lose-lose for everyone. This is America and we need to remember who we are.
I decided to do a project in the hopes that I would bring hope to millions of sufferers of CFS, GWS and PTSD because I have a link across the board with all of these illnesses. I’ve experienced all of these illnesses personally, with family, friends and loved ones. I’ve been treated beyond horribly and I’ve watched others be treated like less than dog feces while trying to seek treatment. And then there’s the fact that these diseases keep changing names every so many years. A new name equals a new stall tactic and perhaps we will all move forward with a new set of studies. In the meantime, people are becoming sicker and dying from CFIDS, CFS, ME, GWI, GWS, PTSD, TBI’s and their related cousin- suicide. Why do we have to go down more decades of suffering and death with more useless wrong way studies? Why can’t we start treating patients like human beings with treatments that are known to be useful right now? I’ve had a severe form of arthritis since my early 30’s. Modern medicine still doesn’t know what the exact “cause” of arthritis is, yet it is treatable!
There is a lot of very good sound data on these diseases that can lead to treatments now. The time for the continuous shuffling of this house of cards named GWI, CFS, PTSD, TBI’s and related Suicide is over. Cards that shuffle and play games, you’ve had your time in the dark ages. Now it’s time that all patients get to stand in the sun. It is time for action, hope, treatment and possible cures. No More shuffling.
My story is just my own. It may not be status quo to other patients of CFS/ME, but its’ my story. It’s a story of truth. It’s a story of saving my sons life, fighting for my own life and of watching my friends die. It is a story of war and terror and all the scars and illnesses that we walk away with.
My son and I are good. I could walk away today and never look back on this issue. But that would be a false statement. I thought I would write a book and do a movie project based on the sole objective of helping other patients lead a more hopeful life, to improve patients’ lives and to bring International awareness to a host of serious biological illnesses that are being tossed into a wastebasket diagnoses within a psychiatric ball of crap.
But that turned out not to be the entire case. I am doing this project for all of the above. However, I am not only haunted by those suffering now. I am doing this project to honor those that have passed away. I am doing this for The Fallen. To those that have fallen, let me give everything I have in your memory to right these wrongs and along the way, may many more be spared.
On Monday June 27th The Preface of Viral Assault The Book will be released. We will be releasing the book chapter by chapter, every 7-10 days. Viral Assault can be read here or on Facebook or on Twitter and on Medium. We have chosen to release this in print and audio. There is no cost to read or listen to this book.
Julia Hugo Rachel
Very Lucky Girl on Valcyte
There is no crime in having CFS, GWI or PTSD. Yet grievous acts of criminal cruelty have been afflicted onto millions of patients that have these diseases. I have spent the past year reflecting on our journey with our illness. Although I have been deeply fractured by this battle of a journey; I am not broken. It is for the patients that have come before us and those that are yet to be diagnosed; that I have decided to devote the next 5 years of my life to further awareness for these diseases. We intend to accomplish this through a national political campaign that is designed to shake up the misunderstandings, the misdiagnosis and the misconceptions about these diseases. The first step in the process to come will be our book, Viral Assault, to be published in December 2015. The collaboration of this book involves a team that is widely respected, internationally recognized and highly credible. I can promise you one thing. I will not stop, I will not quit and I will not go unheard throughout this campaign. You, the patients, deserve to have the funding for research and treatment centers. You will never get this without a political campaign movement and that is why I have chosen to undertake this project.
Although I have not been in the op-ed category with my past blogs, I feel a need to express to you my concerns for the path our diseases are on. I see some progress, I see more regression. I see deception and I see those that cater to causes that will never align our diseases with positive movement in the future. I see a political system in chaos and I see some groups trying to step into state or national politics without any experience in the field. Then, I see “the players”. The players are interesting to me as I think they have held up progress for our diseases for their own self interests. Be it incompetence, inertia or cover your own behinds; these “players” are bottom feeders aligning with folks that really do not have you as a patient in their best interest. I also see some absolutely incredible and amazing folks, whom I call the “Movers and Shakers” emerging in GWI, CFS and possibly PTSD. These folks are brave, highly intelligent, politically savvy and have excellent credentials. Most of these folks, happen to have served our country as well. I am excited to see what they do on The Hill and for the patients. I am excited to support them in their goals to serve patients.
During the writing of Viral Assault, a documentary will be made to reflect the journey of the process. The documentary and book will reflect on facts of our personal journey through this illness, past historical facts that have never been explored and future studies on a theory tying PTSD-GWI-CFS with a possible link to the unthinkable. We invite you to join us on this journey via you tube.
The book and documentary fuel and justify the platform for a political campaign. Political campaigns are best run by seasoned professionals.
The treacherous political process is no place for amateurs. Therefore, we have elected to have the most experienced, knowledgeable and expert navigators of the political process on our team.
For now, the primary avenue for communication for patients will be this blog. We look forward to providing you with additional media through a variety of avenues.
I know that so many patients have been fractured as have I through these diseases. I implore you to stay strong and look to a brighter future of better understanding, treatment and quality of lives.
It has taken me a year to circle to this point of beginning to write Viral Assault. The humiliation, shame and cruelty I experienced through our journey was nearly unbearable at times. To begin the book, I needed to come to terms with how badly I had fractured during the process. While facing the pain, I realized that although I was deeply fractured, I was not broken. I continue on a path of healing with Blake and I look forward to giving you an update very soon on Blake’s condition.
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE
Feel Free to Check Out my Complimentary Site: http://juliahugorachelmomentstoremember.wordpress.com/
“The flight of the owl is slow, silent and solitary”
If I could give my son anything, I thought I would give him back the 12 years he lost of his youth. Since I cannot do this, I am determined to give him a future of unlimited possibilities.
When experiencing a chronic illness, it feels as if time stands still. In actuality, time is moving slowly and the flight is silent. Silence envelopes ones life after the combustion of life halts to a stop with a chronic illness.
I have taken the role as an observer in Blake’s’ life. He began independent living in November 2012. Two weeks after the start of his new beginning, Blake was hit by a car in front of the University he attends. The hit was gruesome, yet Blake managed to hobble away with minor injuries.
I watched and slowly waited as he fell into a relapse that amounted to a vast drop in grades, weight and cognitive abilities. I watched as he fought to overcome the slide in order to slowly recover his abilities. It took 8 months to recover fully from the trauma.
Although 8 months seems like a long time, it is a drop in the bucket compared to 12 years of ones life being ripped apart. Especially for a 24-year-old.
This relapse was different on many levels. This relapse was caused by a physical trauma, not a setback from an unknown factor. During this relapse, Blake never missed a day of school as a full-time University student studying Physics/Engineering. Although his weight and grades declined, he used every tool available to him to methodically step back up the ladder to his peak.
Blake has now successfully attended University full-time (without missing one day for illness) for 6 consecutive quarters. He has now achieved perfect attendance for the past 16 months. His classes include upper division mathematics, physics, engineering, chemistry, biology and geology. His GPA before the car trauma was 3.66 per quarter. His GPA today is 3.25 per quarter.
Blake began a mild physical exercise program of walking and lifting weights 14 months ago. He decided to join an Army readiness program and started running 11 months ago. He had to halt running and physical exercise for 2 months while he was hobbling on a sprained ankle after the car trauma. He began running again in February and by June was up to 4 miles, three times per week. He has also participated in vigorous ruck marches and tactical labs in the field under extreme conditions.
Blake was put on Valtrex as a therapy after his Valcyte treatment. Post Valcyte and present Valtex treatment, the opportunistic infections are now gone. The HHV-6 levels are lowered. The EBV are still high. Anti-viral treatment is like good endocrine treatment in that the patient is treated on “how he/she feels” not necessarily on “what the lab values say”.
On a recent check-up with his infectious disease doctor, it was determined that Blake may be eligible for military service in 6 months. Until then, he will be starting an antibiotic for progressive treatment for inflammation in the eyes which is starting to be recognized in patients. The tell sign is red lines in the eyes. I have noticed strata looking lines in Blake’s eyes and attributed this to the onset of his illness.
Blake was diagnosed with a thyroid disorder in March. He has been on thyroid medication for five months and notices a great improvement. His endocrine values were slightly off. His thyroid ultrasound showed a small goiter and a cyst. His familial history on the Irish side shows he is a 6th generation thyroid patient. Many physicians diagnose thyroid issues on lab values only. It is imperative to find an endocrinologist that diagnoses on; lab values + ultrasound + familial history + how the patient feels = diagnosis.
At this moment, Blake is at 85% of cognitive and 80% of physical capacity. The goal of his treatment team is to get Blake to 100%. Blake hopes that will happen in the next 6 months. His goal is to join the Military and to serve his Country.
For a long time, I fought and watched over Blake at close range. Now I find myself watching from a greater distance. I wondered if Blake would be able to “catch up” socially and if he could find his way. We had three prior attempts at independent living. This fourth time has proven to be exciting, yet not without a few hurdles.
Blake has a faith that is strong and complete. He is a strong young man with dreams and goals. It is a pleasure to see him play sports with his peers, to participate in ocean and lake activities, to attend social functions and to give to others through community service.
All of this would not be possible without Valcyte treatment. The alternative immune treatments he participated in look to be responsible for stimulating the energy to exercise; but only after primary healing had occurred. The Valtrex (or other long-term anti-viral) is a necessity for treatment to continue fighting the viruses after the heavy hitting Valcyte treatment. Clearing up any opportunistic infections is critical to success. A patient will never attain a moderate level of health if a thyroid illness is present and remains undiagnosed.
We have no idea what the next year will bring. We are certain that whatever this illness throws at us, we are willing to fly slow and defeat it.
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE
I have been writing Very Lucky Girl on Valcyte for 3 years and 3 months now. During this time, I have shared our families journey on Valcyte along with some of the lessons we have learned along the way. We have opened our lives to readers in the hopes that some patients will gain more knowledge about their diseases.
Very few full recovery cases have been documented for CFS/CFIDS. Blake’s’ case is miraculous, yet for 6 years he stood on the edge of a cliff. He stared into the abyss of the unknown. It is for youth that stand on this cliff, that I continue to write and continue to progress towards an agenda seeking political action on behalf of diseases linked with CFIDS/CFS/GWI and PTSD..
I receive many comments on this blog and I respond to each one individually. The comments have been the most rewarding part of writing this blog. I have had the opportunity to speak with parents and youth around the world who are experiencing the same journey as Blake and I have endured. Together, we travel this road. Together, we face our hurdles.
On January 20, 2012 at 8:55 pm I received a comment on the blog from a young man named Will. Will explained that he identified with Blake in many ways. I replied immediately to Will that evening and commended him for seeking medical attention with a well-known doctor. In my heart, I sensed that Will was very much like Blake. They both were runners, they both were good students, they both had lost weight and they both had lost the ability to cognitively understand reading materials. The similarities were haunting and familiar. Will was around 21 years old, Blake was 23 years old.
I did not hear from Will again. Today, he crossed my mind so I went to email him to see how he was doing. The last I heard, he was making a decision on what route to take with his medical treatment. I was curious to see how this was going for him and how he was feeling.
Instead of emailing Will, I decided to Google him. It was a sixth sense judgement call that sprang from pure intuition. As I pushed the “search button” to Google Will the links started to appear. My eyes shut tight, they immediately began to swell as tears flowed down my cheeks and sobs began emulating from my throat. Will passed away on May 17, 2012 after battling this neuro-immune disease for 7 years. He passed away 4 months after writing to me.
I began to read more about Will through the obituary and articles. Will had turned to music as did Blake. I listened to Wills’ awesome tunes. I re-read his emails and I could feel his resilience and beautiful soul. I watched a Video of the Community Memorial. I watched the faces of Wills family, his friends and his community in the video. This beautiful soul was surrounded by so much love, so much compassion and such positive energy that I felt enlightened to have had a glimpse of Will through simple email messages.
Will wrote to me because he was looking for answers. Now I search for answers from Wills’ life.
I grew up in a beach town, body surfing. Recently, I have gone back to swimming. Every time I paddle out, my heart shall connect with Will. He was an amazing young man and a beautiful soul.
My heart and condolences go out to Wills family and friends and the community who supported this young man.
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE