Niagara Falls Lights up Blue for CVS | 4 Years Living with Cyclic Vomiting Syndrome
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Four Years with Cyclic Vomiting Syndrome
In January of 2019, my first symptoms of CVS, Cyclic Vomiting Syndrome, appeared. I didn’t know it then. but I was headed on a journey that would alter the path of my life forever. It seems ominous, and maybe a bit dramatic, but this is real life for me. What I thought was a bad case of food poisoning ended up changing my life forever. I’ve been scared for years to talk about it, worried that my friends and family would roll their eyes and say that I was just trying to get attention. The fact is, I’m too sick to hide it anymore. Anyone who is around me for long enough can pick up on the fact that something isn’t right. I can’t drive, I take medication constantly, and I quite often double over in pain. My secret is out.
Before January of 2019, I was an active 30-something who loved running, Crossfit, cooking, and working in my shop. Little did I know that this disease would wreck my body and have me in bed for weeks at a time. I kept it hidden for three years from most of my family and friends. I wasn’t sure how to tell everyone that I couldn’t keep food down and that my stomach hurt so bad that I had to go to the ER once a month. I felt that it made me look weak, although my pain tolerance is sky high thanks to this disease. It felt like I had a knife plunged into my stomach, or like I was in labor about to give birth. I had never felt pain that intense before. I didn’t know what this was, or what this meant for my future. My husband and I were scared that it was cancer or a tumor. We went to doctor after doctor seeking answers. Finally, 2 years after the first symptoms began, we had the answer; it was CVS.
Before CVS….my first 5K with my husband in Okinawa, Japan.
“There’s no cure, but we can treat the symptoms”, my doctor told me. Hearing the words “no cure” was hard. It still is. How badly I wast to be rid of this disease. How desperately I want my old life back.
Before this illness, I was strong. Mentally, physically, and in any other way I could be. As a Marine Corps wife, I held down the home-front while my husband was away. That was my job, my duty. I took care of our kids in Japan while my husband was off helping other countries train their troops. My children looked to me for strength when they missed their dad.
Now, I couldn’t get out of bed, unless the water I tried to keep down was coming back up on me.
“It’s been 84 years…..” - Rose DeWitt Bukater
Four years. It’s been four years of this disease. It feels like 84 some days. It hasn’t gotten better, either. In fact, it’s progressed. I now have a heart condition, a severe ulcer, I’m getting hemiplegic migraines (a migraine that mimics a stroke and makes me faint), and having abdominal migraines that last for months on end without a break. On a positive note, I’m keeping more food down these days. I like to look at the bright side.
I decided last year to start speaking out about this illness. Why? Because it goes undiagnosed in most people. It’s extremely rare, and hard to diagnose. There’s no test that can detect it, and you can’t see it on any screen. The reason I got my diagnosis was because I was talking about this mystery illness plaguing me, and a YouTube subscriber emailed me with a new disease that was first discovered in South Korea called CVS. She mentioned that she had it, and she strongly thought I had it. I’m forever grateful to her.
Being a YouTube creator, I have a wide audience, and my speaking out about it has helped several people get the diagnosis they need. It gives me a sense or purpose to help others who have this mystery illness going on, and offer them hope, especially when it’s their child that is sick. This is mainly a childhood illness, but super special people like me get to experience in childhood AND adulthood. Being able to help parents who have children suffering gives me joy in the middle of the pain. Helping others now is something I’m determined to do, as someone did for me.
The hardest part right now is knowing that both of my children have a 50% chance of being a carrier, as this is genetic. As far a we know, I’m the first carrier of CVS in my family. My children can either develop it, or pass it on to their children, my future grandchildren. It can, and most likely will, end my life at some point. I don’t like to think about it, or talk about it, but that’s the reality I face. I most likely will pass from this disease at some point. Either from cardiac arrest or malnutrition. I’m determined to live a long life, though. I’m in a support group on facebook of several thousand. People die monthly in the group from suicide, heart attacks, and from malnutrition. Suicide is a big one, though. This illness is very physically painful. Knowing how you’ll likely die is a strange feeling. I’d rather not know, if I’m being honest.
This year on CVS Awareness Day, Niagara Falls is lighting up blue, the color for CVS, to spread awareness about the disease. It’s a little beacon of hope for those of us in the CVS community. We feel “seen” for the first time.
The last 6 months have been the hardest for me. In September, I had an abdominal migraine start due to my medication being switched. Abdominal migraines are extremely painful. It feels like hunger at first, then extreme hunger, but no food will make it stop. Then (for me) it goes into contraction-type of feelings, like I’m in labor. Usually, my abdominal migraines end after 1-3 days. This one, however, stayed until January 6th, 2022, when I had an experimental treatment done at the local hospital.
The Lord had much mercy upon me, and sent a doctor into our lives that changed the course of this illness for me. My new doctor, a GI doctor, treats 2 other patients locally with the same disease. As rare as it is, I couldn’t believe that there were 2 other people in my surrounding area with it! There is an elderly woman and a young adult male who also have it in my area. My new doctor told me in late December that a new treatment, a shot into my stomach, has been very effective for his two other patients, and it changed their lives.
I was desperate. I hadn’t worn anything but dresses and sweatpants (anything else on my skin would hurt) for 6 months and was in constant pain. Two weeks prior, I ended up in the ER at our military base, screaming in agony. They ended up giving me morphine, a first for me. As soon as it wore off, I was back to where I started, screaming in agony. I hate to admit it now, but I thought things that I’m ashamed of to this day. It was so bad that I didn’t want to live anymore. It had never been that bad. When you’re in such pain, though, for that long, it’s hard not to think thoughts like that. The ER nurse accused me of being a drug addict, and tried to get me to admit to using drugs. They wouldn’t allow my husband with me due to C-19 restrictions, and he’s my patient advocate. I wanted to scream at this woman, and told her that if she didn’t believe me, she could test my blood. I had never been so offended in my life.
Which is why I signed up immediately for the experimental treatment offered to me by my new GI doctor. I was going to have Botox injected into my stomach. Yes, the Botox for wrinkles. Yes, I know it sounds crazy, but when you’re in that much pain for that long, you’ll do crazy things. My doctor was so kind, and so excited, to get me into the OR, that he wanted to do it THAT DAY, but I had to be tested for C-19 first. He was beyond positive that this would work, he promised me it would, but I have to admit that I was skeptical. Nothing else had worked, even very strong narcotics One week after the injection, My life returned to normal. I was elated!
More than that, I started to feel hunger and thirst for the first time in YEARS. You might think that not being hungry is a good thing, but it’s not. It’s not healthy. I couldn’t hold food in my stomach or drink more than 2-3 ounces of water at a time. Now, I can drink again. I can eat a meal. I can even wear pants again. I’ll have to go back in about 6 months for another injection, as they wear off, but I’ll be able to do this for about 2 years. Once I build a tolerance to the Boxtox though, I’m not sure what my doctor will do. I’m trying not to worry about it. He’s giving me life for 2 years, and I’m so grateful.
The same doctor just checked my ulcer this past week (March 3), and it’s 90% healed thanks to his treatment. We were overjoyed at the mercy and grace the Lord bestowed upon us.
Lessons Learned
Through all of this, I know the Lord has a plan. I’ve had to learn it the hard way that it’s easier to just trust the Lord than rely on trying to understand this myself. I know it’s refining me and sanctifying me. I know there’s a purpose bigger than my life here. It’s the only thing that keeps me going.
I have a wonderful church family that not only helps me physically, but prays for us constantly. They are our support system, our family. Being that we’re a military family, we live far from any relatives. Our church family has no idea what they mean to us and how important they are. They’ve made such a difference in our lives over the last 3 years. They’ve been by our side every step of the way. Through experimental surgeries, to bringing us meals, or even just listening to me cry, they are always there and we are eternally grateful.
Through this, I’ve learned how to trust God, how to pray fervently, and learned true peace in the midst of a storm. I’ll have this disease for the rest of my life. I’ve accepted it, as hard as it is. But I always have hope. I hope for a cure. I have hope for my children and future grandchildren. I have hope that I won’t leave my husband a widower.
The Lord has blessed me with a platform to get the word out about this disease, and I’m using it. I want others to know Hope, to know Christ, in the midst of pain and suffering. He is our only hope, our only Salvation. Healthy or in sickness and suffering, we are in need of a Savior.
Because of the hope Christ gives me, I can smile in the midst of pain. I can be joyful when it seems bleak. I’ve found myself telling my husband the good things, on the days when the pain is so bad I can barely walk without assistance. “But the sun is shining today!”, I tell him. “It isn’t as bad as ‘insert awful day here’, though”, I’ll say. “But I could still make dinner tonight", a huge win for me, as I love cooking. When you have something like CVS, the small things are the big things.
It’s no small thing that the Lord blessed me with my husband. It’s a big thing. He has no idea how important he is to me. Not because he takes care of me, but because he loves me despite what happens to me. He’s never once complained about taking care of me. He’s never once held it against me. He’s the first one to pray over me, and he’s saved my life (literally) on more than 2 occasions from this disease. He gives me joy in the midst of suffering, and always tries to make me happy. I lost my ability to drive last year, and he’s taken that on, too, without complaint. As I’ve said, the Lord has abundantly blessed me.
I don’t know what this year will hold for me, but I will be holding fast to Christ through it all. In the end, that’s all any of us can do.
Hold fast to Christ.
Soli Deo Gloria,
Mandy
