JENNIFER'S STORY OF CVS:

MY LIFE STORY


HI EVERYONE! I feel in my heart that it is time to tell my full story. This will be mostly health related and significant life experiences that has affected my health both phisicslly and emotionally.
I was born is Philadelphia on March 21, 1980, and after 6 months we moved to the Buffalo, NY area (up till age 5 in Derby, then moved to hamburg and at age 12 we moved to orchard park but still hamburg school district). I would say the school part of my childhood was great. It was a great school.
So anyways, starting at age 2, I began having these episodes of severe vomiting. Through age 2 to 10, I was not only suffering from cyclic vomiting syndrome  (for me it presented as 4 to 6 episodes a year, vomiting every 15 minutes for 5 to 7 days) and always ended up in the hospital with severe dehydration (and they always admitted me), but I was also going through every test known to man (only a small exaggeration). Finally when I was 10, I was diagnosed with CVS. They then found that zofran IV in high doses stopped the episodes which worked through high school
At this time I would like to switch to a different and difficult subject. While I was going through my health issues, I was sexually molested from age 4 to age 11. I knew him. He was a member of my family. Someone I trusted. He was my grandfather. I am a survivor and I am not afraid to talk about it! But because we never pressed charges so as not to upset the whole family, I had to then be around my attacker at EVERY family function. It sucked but I dealt with it. Although now my extended family denies it or says it only happened once, but I lost them when I got sick anyways as they wanted nothing to do with me. Anyways, one weird thing is that I was in counseling for 2 years after my parents found out, but I seriously only remember one session (the doll one). The rest I subconsciously blocked because I don't remember it at all!! I wish my subconscious did that to the abuse memories :\
I'm sorry if this makes any one uncomfortable, but this is my life story and I feel it should be talked about.
I did very well in high school and college, both health and grades and just life in general. I attended Syracuse University and earned a degree in Civil Engineering (graduated magna cum laude). I immediately started working for the state in their structures division where I designed bridges for 6 years.
As I grew with CVS, the more severe and violent it got. The vomiting became very violent and constant. Now I immediately need an ambulance and once in ER, I need high doses of IV dilaudid, ativan, zofran and pepcid to stop it and if that doesn't work they just try to sedate me to stop it.
It was in 2002, when I was 22, that my health started to worsen.
Side story...in early 2004, I lost my very best friend to leukemia. We were 23. We grew up together since age 12. She was Deaf and is the reason I am in the Deaf community today. That was the hardest thing emotionally and grief related that I had ever experienced. I was even helping to care for her the last 6 months...every week from Wednesday to Saturday\Sunday. I still think of her everyday. Also at that time I was in a relationship (well we bought a house together so) with a man 16 years older than me and he had 3 kids. The kids were great. He was abusive. Mostly severe verbal abuse but it did get physical and then I left him. I am mentioning it because I think it played a roll in my health.
So here's the story of my gastroparesis. I actually had symptoms as young as 19 but I had no idea what was wrong. I just knew I felt sick and tired after eating. But as I said, symptoms started to worsen and finally in 2006 I was diagnosed with severe gastroparesis and celiac disease. It got so bad that I almost died from the weight loss, dehydration, and malnutrition. So in 06 to 07 I had a PICC line with TPN for about a year. I was also sent to Cleveland Clinic where the did nerve blocks and ablations for the stomach pain.
Gastroparesis was my biggest struggle at that time especially because my doctors knew so little and said I shouldn't be in pain. Morons. I've been through so much crap from this disease: doctors not knowing enough so I didn't get the right treatments at first, doctors dropping me because I'm too complicated, fighting with insurance companies, being labeled a seeker, doctors that just plain didn't believe me, friends and boyfriends thought I was making it up for attention, etc.
There is so much gastroparesis and illness have taken from me....friends, family, my career, my independent life...yes I grieve and still cry sometimes, but I now have amazing friends through the fb support groups, and it's totally changed my perspective. What's really important in life. I love my new online family SO MUCH!!
I could literally write 10 pages just on gastroparesis, but that's it for now. It'll come up again lol.
I should mention here that in 2006 addiction also became part of me. It was all the drug Soma (muscle relaxer). It is the only drug I have ever chased a high from. I didn't take more than what was given but I would finish a month script in 1 to 2 weeks and then I just wouldn't take it till my next refill. This drug doesn't have withdrawal symptoms. But now my family forever thinks of me as an addict. Once labeled addict for anything it really screws you. But I admit I did have a problem with Soma.
So also around 2003 (after 2 surgeries in my right ear to fix a hole in my eardrum), I developed Trigeminal Neuralgia. Through medicines and adjustments, it went into remission around 2007. By 2008 though, my gastroparesis was so bad that I had to move back in with my parents back in Orchard Park NY. The TN then resurfaced in 2013. This time I required surgery. I had Microvascular Decompression (MVD) surgery (brain surgery). The surgery ended up triggering CVS 3 times wich irritated my stomach so bad that gastroparesis became worse than severe. I wasn't able to eat any solids and only drank these healthy shakes we made. I lost so much weight and was so malnourished that I had to get tubes. So in july of 2014 I got a g tube for venting my stomach and a j tube for feeding and medicine.
I forgot to mention I got SSD in 09 when I became too sick to work.
So here I am now. My doctor now thinks my intestines don't work anymore either. And unfortunately, the trigeminal neuralgia has resurfaced. I don't know what the next step is. For gastroparesis my next step is the gastric pacemaker which I will get at Cleveland Clinic.
I forgot to mention a major factor on how I am doing day to day and that is migraines. I get botox treatments and nerve blocks to prevent them but I still get them daily. I just saw a new neurologist who has many new ideas so that has given me hope! It just sucks because migraines, gastroparesis, CVS and crohns disease all like to flare at the same time and they feed off each other!!
One thing I really want to emphasize is how much being sick has affected my mental health. I have severe depression and anxiety. I often isolate myself and stay in bed....mostly from illness but depression can keep me down. It has gotten very severe and in 2010 I did attempt suicide. I admitted it the next day and was committed to a mental hospital for 11 days after that. That was my emotional low. But since I have met all my online friends through the support groups, when I start feeling like I'm getting that low, I just post about it and the support I receive lifts me back up again. Plus the anxiety is horrible once I start getting nausea or other health issues. It makes everything worse and I'm on medicine for it. Anyways I wanted to make sure people realize the depression and anxiety usually become part of any chronic illness. It can even come from stress that family or friends may cause because of being ill. Sometimes my family hurts me the most but then they are always the ones that are there for me always....they get frustrated seeing me sick.


Before I wrap up, here is a list of all the illnesses I have been diagnosed with over the years:


gastroparesis
full digestive tract paralysis
crohns disease           
cyclic vomiting syndrome     
Celiac disease
severe GERD   
TMJ
Chronic Malnourishment (from gp) 
Chronic dehydration (from gp)  
trigeminal neuralgia gastritis    
hypothyroidism
severe retractable migraines
raynauds disease (sorry if I'm spelling it wrong)                              
tendinitis in my right shoulder
tinnitus (in ear that I had 2 surgeries on)
POTS  
Allergies
Exercise asthma
Chronic UTIs
Iron deficient anemia
Stomach migraines
Insomnia
PTSD
severe anxiety and severe depression
herniated disc in my neck                    
adrenal fatigue or insufficiency
heat and cold sensativity
I have a g and a j tube for gp, which results in more problems like:
    burned skin
    granulation tissue
    Infection
    Other skin and stoma issues
teeth enamel issues
chronic sinusitis
IBS
Possible Fibromyalgia


Well so that is basically my story in summarized form. I am an open book: if ANYONE ever has a question just ask. I will answer anything except give out names.
Thanks to everyone who read this...I hope it can help you in some way.
I have learned so much from both good and bad, but I wouldn't change a thing because it has made me the person I am today!! I just live in the moment and fight everyday!!
Love, Hope and Peace to all
Jenny

 

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