Greetings To All!
I am Julie Kennedy. A few weeks ago I accepted the challenge of becoming the new Adult Coordinator for the Cyclic Vomiting Syndrome Association USA & Canada. I am leaping in with both feet, blindfolded I feel, trusting that I can manage this position as well as Michelle Carlborg has for you in the past. Please allow me this opportunity to introduce myself. I would like to begin by telling you a bit about my interesting family and myself personally. I will be looking forward to getting to know each of you on a more personal level, as time goes on.
My husband, Michael, and I live in St. Paul, Minnesota with our very blended family. Mike's daughter, Stacy, is 24 and will be getting married this coming Spring. Stacy and her fiance, Tony, live not far from us on the Minnesota-Iowa border. Stacy is just coming into her 3rd year of remission of conquering Hodgkin's Disease. My son, Chad, is 23.He is married to Jessica and they have given us two beautiful grandchildren. Bailey, just born this past September, and Blake, who is three. At home we still have Adam, who is 14, and his sister Kelsey, age 9. Adam is a brilliant student and attends a small Catholic high school in our community. Highly competitive in not only academics, Adam participates in hockey, baseball and golf. He is his grandfather's pride and joy on a golf course! Adam is a typical 14 year old in that he LOVES the girls and he can't stand waiting to take his driver's training classes this winter to obtain his driving permit! As a mother, I'm not sure which scares me more, the girls, or his having a driver's license! For years Adam has wanted a dog and he now has a huge, 90 pound Golden Retriever named, `Adam's Last Chance'. Having a sister with allergies hindered his dog ownership earlier in life! Another hindrance in Adam's childhood has been his experience with having CVS since the age of two. He still suffers from episodes, and also, has migraine headaches. With the use of Elavil, Phenerghan, and Ativan once in a while, we manage to maintain what I feel is some kind of control over either aborting episodes or managing their severity. Kelsey, our youngest, is in the third grade and attends a very small Catholic elementary school only blocks from home. You may think that with having CVS, Adam would have been our major medical challenge in life. Not so! Through the years Kelsey has made a great attempt at achieving this award for herself! Since the young age of two months, Kelsey has been chronically ill with severe allergies, and upper respiratory and sinus complications. Over the past year we have been getting the asthma under control and have a better handle on the allergies. Kelsey has spent a lot of time in the St. Paul Children's Hospital with asthma attacks, Whooping Cough, a collapsed lung, sinus surgeries, and allergic reactions. [People have insinuated to me that having a child with asthma is better than having a child with CVS. I cannot quite tell you which is worse. To sit and watch your child struggle for each and every breath, to literally stay alive, or to sit helplessly by while your child vomits so violently, over such a long period of time, that you can't imagine how they can live through it. CVS and asthma, are each as torturous and debilitating as the other, in my eyes.] Kelsey loves to read, watch old TV shows and movies, write in her journal, and create lots of arts and crafts projects. Kelsey loves teddy bears and has herself quite a collection! She is currently working on her own web page dealing with asthma, which when finished, will link to the CVS children's web ring.
Mike, better known to me as our, `Rock of Gibraltar', is employed by the Ramsey County Nursing Home, as the `Assistant to the Executive Housekeeper'. After putting in his 8 to 10 hour day earning a paycheck and our desperately needed medical coverage, he comes home to work yet another six to eight hours, as the resident cab driver, cook, dishwasher, laundress, repairman, tutor, gardener, pool man, nursemaid, nanny......you name it, this man surely specializes in it! We are very lucky to be blessed with such a devoted husband and father.
I am remarkably fortunate for having the opportunity to be a work at home mom, and I thoroughly enjoy my chosen service to the community. Mike and I, together, run an emergency shelter home for abused and neglected children, who are in crisis, and range in age from 0 to 12 years. We average 8 children per day, and this service is provided in our private home, within a family setting. Children arrive 24 hours a day, 7days a week, 11 months out of the year, via county social workers, police departments, or sheriff's departments. We only have time off from our constant on-call duties of providing care for thirty days a year. People hear that `thirty days' and just can't imagine having that much time off! Go figure. It isn't much compared to what an average person has free while working an average 40 hour work week!
This type lifestyle doesn't leave much time for a person to endure the effects of an illness such as CVS, either. I can honestly vouch that with two of us in the house suffering from this dreadful illness, there are days that are just not easy. Yes, not only does Adam have Cyclic Vomiting Syndrome, I do, too. How lucky can one family be?
Where does one even begin to tell this long tale of extreme frustration and mystery? I find myself asking the same questions of myself over and over again. When did `it' begin? Could it have been the Christmas Eve, when I was 10 or 11 years old, and vomited nonstop all through the night after opening presents? Or was it the year I was so sick I couldn't attend my first 8th grade dance with all of my friends, due to pure exhaustion from vomiting so long and so hard? Or was it that same year when I vomited relentlessly through a three day train ride to the West Coast? What is it? Professionals have been known to refer to it, more than once even, as possibly a gastrointestinal obstruction, liver disease, a brain or abdominal tumor, Celiac Disease? How many names has it had over the years? The Flu, a 24 hour virus, Anorexia, Bulimia, Ulcerative Colitis, Irritable Bowel Syndrome, Appendicitis, Crohn's Disease, gallbladder disease, psychiatric disorder, GI motility complication, depression, food poisoning, food allergies, high anxiety, stress, an illness of unclear etiology...the list goes on. How many medications has it been treated with? Tagamet, Zantac, Propulsid, Cisapride, Carafate, Prilosec, Amitriptyline, Imitrex, Phenergan, Ativan, Zofran, Compazine, Erythromycin, Inderal, Reglan... trials of medications that have either not worked, worked for a period of time, or may still be working. How many tests have been done for it? The endless endoscopies, colonoscopies, bowel imaging, CT scans, MRI's, the vast variety of motility studies, bleeding scans, an abdominal angiogram, a kidney IVP, numerous ultrasounds, small bowel follow through x-rays, an echocardiogram, numerous tumor work ups, 2 small bowel enteroscopies, repeated tests for H-Pylori, Amyloid testing, chest x-rays, autonomic testing... another never ending list. How many vacations or holidays has it disrupted? Too many to count, or even remember anymore. Has it ruined any friendships or intimate relationships? Our marriage has suffered for many years through the turmoil of an undiagnosed illness with such a destructive impact that stronger marriages could not possibly survive. So far ours has. I will be honest here, and say, barely at times, but it has. Has it compromised my career at all? Being in a situation where I my work is contingent on my being an independently self-employed contractor, I have no sick time or time off coverage. Has it jeopardized our health or life insurance coverage? After three unnecessary surgeries; an appendectomy, a vagotomy with an antrectomy, and a laporoscopy surgery for Chrohn's Disease, the hundreds of different tests, the numerous ER visits and hospitalizations, I am no longer insurable on an individual basis. Mike and I have repeatedly attempted to find more of a life insurance policy than what we have for me at the present time, with no success. Does it make me feel crazy, out of control, different from others, alone, angry? There are definitely times when I question whether some medical professionals, who have insinuated that this may all be a psychological problem, may actually be right. I really begin to believe that there is something wrong with me psychologically. Then I try to focus on the validation I have received from all of the CVS facts and information and I can start to get out of the funk I find myself sinking into at these times.
At 42 years of age I feel as if I have lived with it through each and every one of my life's cycles. It was around long before my parents or myself ever believed or seemed to understand there was a problem. Suffice it to say my history with it is an extensive one. There were many lengthy stretches of time where I let my guard down, naively believing that I had been sick for the last time. Then suddenly out of the blue it would rear it's ugly head again, unrecognized for the illness it truly was. To complicate matters even further, we had a son who was enduring a phenomenal illness of his own, that we were also on a journey to discover answers for. On more than one occasion Mike, myself, relatives and even friends noticed and commented on how much alike mine and Adam's symptoms were. Somewhere amongst the testing and the consults with the physicians, we tried explaining my "same type symptoms" to this particular pediatric GI specialist, and the response was mind boggling. He looked directly at me, and replied in a blunt manner, "Parents must be very careful that children do not imitate or begin to live what they see." I was stunned, utterly speechless, mortified! The instant guilt, the humiliation, the shame I felt was absolutely heart breaking. To hear that another human being, could in fact truly believe, the far reaching consequences of my episodical bouts of vomiting were that I was teaching my son to duplicate my symptoms, was not comprehendable to me. Waking in the dark of night or early morning hours to a nausea that is so overwhelming I can barely manage to move before beginning to vomit. The horrendous vomiting, quite frequently combined with blood, that eventually turns to nonstop violent retching. The inability to move, to speak, to swallow, to even think is so completely debilitating. Episodes that are sometimes accompanied by an abdominal pain that can be the excruciating. An exhaustion takes over, that is so extreme, yet I can scarcely let it consume me, due to the barrage of nausea. These are what a mother teaches her son?
What is even one step closer towards bizarre in all of this, is that during my last complete evaluation at Mayo Clinic in Rochester, one of the doctors there made the same kind of remarks when the question of illness and genetics arose. My original gut reaction was the same as it had been years before. Instantaneous guilt. Within minutes I regained my focus and refused to go down that road again. I needed every ounce of energy I could muster to battle this still undiagnosed illness, not some doctor's stupidity!
As adults, it seems that most of us posses a desire for validating happenings that take place in our lives. I must say that I have only received validation from one person and from one place through this entire ordeal. Never for one second, in the past eight years that I have been seeing him, has my GI specialist, ever doubted me. He has stuck with me every step of the way. I have never had to face the fear of trying to convince him of the irrefutable fact that there was something wrong with me, and that it was not all in my head! That, in itself, has been my saving grace through many dark moments. The second form of validation came when I found the "Official Homepage of the CVSA/ USA/ Canada". This was the answer we had so desperately been seeking for so many years! It was such a shock to actually see the very words in front of me that told of our quest with Adam. After12 years, I was elated to finally be able to confirm our belief that Adam was ill with a verifiable disorder! I first joined the CVSA as a member and received all of the hard copy information available. For months, I poured over every single word written on the CVSA Listserve, asking a great number of questions and listening to answers. I began a new crusade to find a physician to officially diagnose Adam and set up a workable treatment plan. It took some sleuthing, and in the end, he was seen by a resident pediatric neurologist who was familiar with Dr. Fleisher and Cyclic Vomiting Syndrome. This resident wholeheartedly agreed with the diagnosis of CVS in Adam's case.
I tell this, far from brief excerpt, from what I call the "long version story", for a reason. In the pursuit of searching for answers to Adam's illness, I finally saw a glimpse of hope for finding answers for myself, also. As a mother, I HAD to persevere in completing the medical journey for my son before continuing to search out my own exploration of how Adam's case could pertain to mine.
Over the following months, I spent a great deal of time reading the `official' data and the personal reports from the list serve, and I discovered that although CVS does afflict adults, it is quite uncommon. There are not as many cases in regard to facts, or written documentation, on adult CVS, as there is pertaining to children and CVS. As a result, I believe there are adults out there self-diagnosing themselves with CVS, as opposed to having the privilege of doctors validating a diagnosis for them. As adults, we deserve at least this much after being cursed with this illness.
As Adult Coordinator of the CVSA, it is my intention and goal, while working with CVSA Board Members and the general members at large, to continue getting information out to where it is available for people who are yet searching for answers. I will also be working on a creative way to increase communications for us adults, already `in the loop', so to speak. Quite possibly we could use an adult forum to address the adult CVS population's support needs of sharing personal stories, questions, facts, ideas, suggestions, comments, or whatever the need may be.
It will take each and everyone of us, working together, to bring success to this plan. Support is the key word. Support yourself and other adults with CVS by supporting the Cyclic Vomiting Syndrome Association.
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