Pivoting Towards the Future With CFIDS/GWI/PTSD Diseases.

Learning to Pivot with a chronic illness.

Pivot Sprinklers are a method of an Agricultural Crop Irrigation system in which equipment rotates around a Pivot.

This equipment is technologically advanced and useful in certain types of terrain whereas other types of irrigation equipment would not suffice. There are approximately four different manufacturers of Pivot irrigation systems in the world. One of them holds 60-65% of the industry, two others compete for roughly 30% of the business, and then one company holds about 5% of the market. How does a farmer discover that company which holds the 5% share of the market? By word of mouth.

 Right now, I am looking out my office window at a fairly extensive Pivot system made by T&L who is the 5% market holder. The pivot is an interesting mechanically engineered device with precision calculations. I’ve watched pivots in motion for a decade. Little did I know how much I would have in common with this machine.

 With the latest viable studies being published on  the viruses HHV-6A,  EBV and CMV; it seems as if our diseases are  pivoting towards the future. As advocates, patients and caregivers we have diligently pursued understanding, coping, fighting and even battling for and in our condition. Unfortunately, the time is not quite ripe for vindication or a cure.

  We are in the “baby step” mode of figuring out our illness and must take the proper steps from A to Z. We need  to define the subsets involved then research the medications to treat these diseases.  Although there is hope on many fronts, science is founded on due diligence and only concedes to “scientific proof which can be replicated”.

 The externalities of central nervous system overload for long periods of time are managed with many different medications; however these are band-aids albeit necessary.  One can only wear a band-aid for so long. It becomes frayed, dirty, time-consuming to maintain and the sore underneath does not heal without fresh air circulating around it.

When I think of the mental anguish we have been exposed to as patients with our illness, my heart and lungs cry out for us as a whole. The discrimination, the revolting shunning from the medical and societal realms and the disgraceful condition many of us have ended up in is frightening. I did not know the meaning or the ramifications of knowing the word “prejudice” first hand. Prejudice injects fear, self-loathing, drama and hatred into ones life. Through the process of enduring this, I discovered that I have a choice to pivot in my thoughts, actions and words into how I choose to move towards the future with my illness.

 I choose to pivot away from the shunning, the despair, the anger, the hurt and the emotional trauma of dealing with our illness. I pivot to a place of strength as I try to navigate this river that at moments has no current and is dead calm; then abruptly turns into class five rapids.

 Reflecting on the past in order to pivot towards the future, I am analyzing the past year of medical treatment for Blake and myself. Blake started Valcyte one year ago last month. He takes 900mg once daily. He is also on the ALT diet and takes DHEA due to low blood test results. He is deficient in nutrients according to the Spectracell Nutritional Assay Blood Test, so he takes prescription vitamins to address this mal absorption issue. Blake takes around 40 Vitamins total plus D-Ribose and Protein Powder spread out at 7 intervals throughout the day.

  During Blake’s journey with this illness, he had tried to continue attending high school on/off for 3 years. He would sometimes last 2-6 weeks at school before becoming bedridden again. He attempted to attend regular classes about 4-5 times during that 3-year period. He finally ended up completing high school through a series of independent study, home/hospital and other school programs tailored to his needs. He then attempted a first year of courses at a junior college while living in the dorms.

So many doctors had told Blake “to get up and get on with his life”, thus he attempted to do so. Blake enrolled in a junior college and lived in the dorms while he tried to forget he had this undefined illness. He ended up on academic probation in college and completed about 8 units of 36.0 attempted. He repeated classes and could not pass them. On the last day of college, Blake called me to pick him up. I was astonished that he wanted to move back home, as he had fought so hard for his independence and health since his illness began. When I picked him up, I was astounded, shocked and horrified by the young man sitting in the rain waiting for me. He was but a shell of himself. I realized then, that if we did not get a diagnosis and treatment soon, I would lose my son to this illness.

 Prior to starting Valcyte, Blake was bedridden for 5 years on and off. The last three months before beginning Valcyte, he was down nearly 40 lbs, was completely bedridden, had a foul odor emulating from his body and he could no longer care for himself. Cognitively and physically he had declined to a 1 on a scale of 1-10. Blake’s cognitive decline also included anger and anxiety. His problem solving skills and ability to read and write were no longer available to him due to loss of short-term memory loss and the “brain fog” which the HHV-6A causes. His socialization skills had declined to the point where he felt ill at ease in conversation and was only able to utter a few words at a time in conversation; even with his life long trusted MD. He had lost his ability to use phrases and could not remember names, places, things or what words to use.

 By the time we got to our hundredth trip to a Doctor trying to get a diagnosis for Blake, this is the condition my 20-year-old son was in at that time. The 100th medical trip in 5+ long years exposed a diagnosis of CFIDS. Blake tested high  positive for  HHV-6A and EBV.  Blake was prescribed a change in diet, compounded DHEA, a vitamin regime and Valcyte as a trial to kill off the HHV-6A and EBV.

 The first 90-120 days on the Valcyte were rough going for Blake. He was bedridden and felt horribly ill during the “die off” phase. However, after about 90 days he began to “awaken” cognitively and his low blood pressure (sometimes the high number was 70) was beginning to stabilize. He began to stand upright when showering; he used to fall down as he was dizzy. I noticed that his balance was better as he was not using the hall walls as hand rails when he walked.  For the first 3-4 visits to the specialist who diagnosed him, Blake was in a wheelchair going through the airport. Sometimes he would refuse the chair, then just sit down ½ way to the boarding gate; he could walk no further. I would go back, get a wheelchair and we would continue on. Watching Blake fight and resist this illness has taught me to pivot towards acceptance. Sometimes we do not have the strength to fight, the best we can do is to “accept and pivot” to a better place mentally and physically. This is a moment-to-moment constant process with these diseases.

 At about month 9 on the Valcyte, Blake began to gain weight and to read and to notice that he had more energy. He began to take walks around our ranch and “muscle memory” from his athletic days started to re-appear. He has gained approximately 20 lbs this past year. He has another 20 lbs to go. At month 10 on Valcyte, Blake began to read entire books again. His walks became longer. He still had chest pains when attempting to run or walk too fast. At Month 10 he decided he might be ready to finish a geology course that he had obtained an “incomplete” in. At month 12 Blake re-entered the college classroom for 4 weeks of attending one class, which includes a laboratory session of 3 hours once weekly. He did very well the first week of school. At the end of the second week, he had a setback and was bedridden for 4 days. He missed one day of school, yet has rebounded and is back in class.

He plans on attending college next semester and attempting to complete one math course. It is a one-hour class, four days per week. I believe he will be successful at this attempt as his condition is improving.

 Blake never talks to his friends about his illness. His core group of “athletic friends” disappeared, as did an entire side of a familial genealogy due to lack of understanding. Blake stumbled through this medical journey by pivoting towards music in his darkest moments. He learned on his own how to play acoustical and then electric guitar. He began to compose and sing music. A band formed. The band members to this day drag their equipment out to our place  and play music with Blake, if even for just an hour or so with his condition.

 After one year on Valcyte, Blake is now more independent. He attends social gatherings, spends more time with his girlfriend of two years, goes on outings with “the band” and is back at college. He rests allot and cannot be on his feet steadily, as he does not have the physical strength as of yet. He is about 50%  physically. Cognitively, I would say he is at a 60%.

 I have just completed 6 months on Valcyte, 900 mg per day. I would say that I am 50% improved cognitively and 25% physically. I feel as though I “am mentally waking up”. My HHV-6A and EBV titers are higher than Blake’s; my DHEA levels are lower than his. I also tested positive for the CMV and the Micoplasma Pn. Infection;  I take  600mg of Zithromax daily to address the Micoplasma Infection. We are hoping the Valcyte will work on lowering the HHV-6A, EBV and CMV levels.

 The first 60-90 days on Valcyte were extremely rough for me. I was totally bedridden during the “die off” phase. I bounced back and began to notice slight improvements that have led me to where I am today. I’ve enjoyed the change in diet and I’ve enjoyed every moment I’ve spent with Blake during this process. I am enjoying watching his journey to Independence and even have a glimmer of hope that he will resume his studies of  engineering.

  I am anxious to get rid of the “band-aid” medications and I look forward to continuous healing. I have accepted, fought, coped and battled this insidious disease on all levels of life.  I have learned to pivot towards people and groups that understand my journey with this illness.  It is by word of mouth only that we have found each other and united. Our task at hand as a “united voice” is to advocate for justice, understanding and most importantly to fund research so we may discover how best to diagnose, treat and prevent our diseases.

With these goals in mind, each one of us endures moment-by-moment.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

 

 

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