Everything is a choice. It’s all about thinking through the options, weighing the consequences to the best of your ability, making a decision so as to put it in action and move forward.
It’s not a sob story by any means, but it is something I’ve had to think about for quite a while and now, since it’s only getting much worse, the choice has to be made to continue as is or as ‘prescribed.’
Most people have never heard of gastroparesis – paralyzed stomach. “Oh, you just have a bug” or “eat some soup, that will help” or “it’s all in you’re mind, you’re crazy.” Yea, that’s just the nice stuff. The thing is, it would be great it was “just that.” But it’s not. And now I have to make a choice, a decision, that will affect my outcome and those I love.
I went to YouTube so as to see what video information there was out there so I could share with you fine folks. What I found, however, were so many stories of people journaling their lives while suffering through this disease, or chronic condition or whatever ‘medical terminology’ it’s called. I became humbled as I listened to some of those folks describe their lives, how it was for them and know that, once again, I’m on the same path most of them are – the need for food to sustain life.
The short story is in 2005, I had a stomach blockage due to an ulcer. I was very sick, in and out of the hospital numerous times. Nothing worked until I was inserted with a PICC line, from my arm directly into my heart. I was on TPN (Total Parental Nutrition) for twelve hours a night, also receiving IV Protonix because I would still be sick although there was NO food in my stomach. It didn’t slow me down any. I just threw the IV pump and the cords in the bookbag and went on my merry way. At night, I lugged around an IV pole. Hence the surgery, hence the repair (I thought), hence life getting back to normal. I went from 127 lbs to 93 lbs. I looked and felt like a beanpole but I can honestly say a positive attitude sustained me during that time.
But there were drawbacks from the surgery that would show up years down the road. Mine started within four years, much sooner than any medical encyclopedia explained. Once again, I became sick, very sick. For months. I ended up at the doctor only because I thought I was getting bronchitis. Top notch doctor, I might add. She started questioning, I gave her answers. One thing led to another and before I knew it, I was in immediate contact with some top notch specialists. I mean quickly. Enough that it scared me. It seems I had become, in our very civilized country, malnourished. Not because I didn’t eat right but because the food wouldn’t stay. Any pill, tablet, capsule could not be taken. It was either liquid or IV or injected. It’s really not fun to let them “clean our your stomach” for you because that’s what they must do. I had to go several times a week for injections and my very employment status went on the line. Regardless, I still remained positive and tried to live the best I could, even when I could do nothing but go to work and come home to fall into bed, with work clothes still on because I was too exhausted to move.
My gastroparesis is a result from the surgery and the clipping of the vagus nerve. You know how if you break your back and a nerve is severed? You would most likely be paralyzed. That is exactly what this is. A nerve became severed and I am literally paralyzed – in the one spot that is supposed to keep me alive. It’s been a real challenge to find what works best for my body – doctors make be smart but we know our bodies the best. I’ve tried many drugs prescribed to help the condition – some with very serious and lifelong side effects, others that FDA has pulled from the shelves but can be purchased from other countries, and just plain no eating anything and living off of Pedialyte.
Over three weeks ago, my stomach seized. It stopped, the whole complete digestive system stops. Nothing goes down but everything comes up, even a sip of water. There’s been almost no sleep in three weeks. You can’t sleep, your tummy produces acid whether there’s anything to digest or not and with a seized stomach, it’s trying to digest but it can’t so, up you jump, heading to the trash can or to the bathroom or out the front door to get rid of that awful mess. And you are so, so very weak. You lie and pretend to everyone that you’re okay but the truth is, you’re slowly dying a horrible death.
Back to the choice – one of the FDA approved drugs is Reglan. The side-effects are very serious and will and does cause lifetime, permanent damage. It’s no joke and I, in my desperation, agreed years ago. It didn’t work. I was immediately hit with all the neurological problems from this drug and it will remain with me forever. When I went to the doctor the other day, I was desperate for some type of relief and some sleep. So, he prescribed me Reglan again, and an anti-anxiety med for sleep. What a waste of time, energy and money. I might get addicted to the anti-anxiety med that can and does provide some psychological relief and bits of sleep now and again but instead, it’s quite okay to take the debilitating Reglan that will not let you function in any type of normal capacity and I AM a proven case of just how Reglan can screw you up.
Hence, the choice. I filled the script two days ago. I read all the information that came with it, again. I’ve researched more online. I’ve continually researched this to find any new information to reverse the effects of that drug. There is none. I ate real food today, first time since this started a few days ago, but I did NOT put that Reglan in my mouth. Nor will I either. I know exactly where I stand with all of this and I’ve chosen not to debilitate my mind any more by eating that particular drug. The panic that I feel when I’m not being very accepting of my acceptance of my condition could be eased if the medical experts would listen to what my body says instead of whatever their unhealthy reasoning is.
I may at some point get a feeding tube, I haven’t made that decision yet. It’s kind of like a cancer patient – making the decision to try and hope you survive or living the best life you can with what you have now. The fact there is no insurance is a big deciding factor but not the main one. I just haven’t felt good for a long time and not many of those I know understand the real issues involved. There are clinical trials available but those might end with even more neurological effects. There’s also herbal medicines that have been proven to ease the pain and allow a dead stomach to crank start just a little. But….that would land me under the jail.
So I’ve made the choice. I won’t take that drug. I will do what I have to do to help myself. A long, healthy life is not in store for me and most days it’s all I can do to get the normal activities done. But that’s okay. I might just be a statistic or a dollar sign to some and a real pain in some people’s butts, but I still opened my eyes this morning and Baby Girl smiled, laughed and gave me a big smacking kiss.
To always be her laughing nanny, that is all I need.
NOTE – To all my super special friends that have helped me along in your own special way, there are no words to express how much it has meant to me. All I can say, from the bottom of my heart and with all my love, thank you!