There has been a piece of my Journey I have always hesitated to share with everyone and as I am typing this? I do not know if this will be the moment in which I share this part of my experience or not? Why have I not shared this? Because I want everyone of us to make intellectual intelligent, researched, confident, well thought out decisions for themselves. Yes, you seek out others who have experienced the same procedure but there are no two of us exactly alike. I want to say on the front end. I would still make the same choice again. Why? Because we live in a body with incurable illnesses I made the decision from a homebound body racked with nausea, vomiting, chronic migraines, swinging diarrhea- constipation it would not absorb its necessary nutrients consequently it was deeply fatigued with malnutrition & recurring dehydration — a never ending repetitive cycle. No one but my hubby and Dr knew the level of health and even some of the worst moments I kept to myself. This part Other #ChronicWarriors will recognize in your low moments you feel a burden to everyone – so you keep the deteriorating situation-the worst moments – to yourself and not add more burden. I will tell you this is a lie the illness tells us. Love is not a not a burden but the illness can cause confusion and create a lack of communication in a family – don’t let that be taken from you.
So, in 2006 I was offered the chance of the temporary gastric electrical stimulator and at that time it was part of a blind trial which I was taken out of because of complications – it came up and it was shocking me..(should have been a heads up right? Nope! Once I make a decision I follow through!)
It was great – the temporary in 2006 for me. I then went through a fight with insurance to get approval for a permanent GES. Some may wonder why I make reference to Jennifer Jaff I was connected to her before she was diagnosed with GP and later passed away. She had crohns when we met and took over my case before the second appeal with the insurance. She won it for me and surgery was scheduled.
I woke up with Dr’s around me, they told me I might be going back in for a blood transfusion because of a large hematoma. If it continued to enlarge they would be taking me back in. They instructed the nurse to give some morphine and I immediately began to have a reaction which they grabbed the next vials to counteract the effects of the morphine. As soon as I could talk The Dr asked whether I was allergic to morphine? I wasn’t before.. he said I was now. So now I use Demerol- the hematoma stopped swelling. I was in the hospital for about a month or so. After I was discharged I ended up back in my local hospital with a UTI and a fever for a few more days. I then began my recovery I soon discovered nothing was going to be “Normal” about this. On one hand my nausea, vomiting, migraine, scale was getting markedly better on the other? I was being shocked from mid abdomen down my pelvic, groin, leg and every time this started? You could “see” my stomach jump like I had a foot inside me. You could visibly see this. These “sessions would go on for hours. This would begin a period of time where I had a surgery scheduled after I had healed enough – remember I had a more traumatic than usual situation. I first had the “box” the “pacer” replaced. Nope this wasn’t the source. So I heal then I schedule the next surgery to replace the lead wires. This changed the level of the shocking but unfortunately not the pain with shocking the next steps are ones only one person can make for themselves. The device was causing me so much pain and mental anxiety I was ready to literally rip it out. So my next steps were a request to turn it off for three months and see if I can manage enough to stay alive. I had still required all my IV Hydration and medication throughout this entire experience. I had been evaluated for an interstim due to state of my kidneys and bladder function but I could not begin to think about another device being placed when I was struggling with this. But I have told y’all I was told I was in my last stages and what was I going do? This is the context of the statement.
What I do not want to do is take hope away from one single person facing incurable illness and if you are asking yourself– why would I expose myself to any of this? This is why- there are numerous patients in the doctor’s offices who would tell you these exact devices saved their lives. They are living, some working, and having a better quality of life because of these devices. It is why I have never given or written this story until there were enough of these stories out and available to be seen. Because it is human nature to let the negatives outweigh the positive.
Remember the phrase, “It takes a thousand that a boy’s or thank you to erase a negative”
I pray this information helps rather than hurts – it is my prayer to serve as a cog in a wheel to move us toward #CureGP
Side note: even the smallest of hiccups like a dissolving stitch with a knot coming out of the skin could not be handled in a rural hospital in 2006 they took x-rays and said oh no we cannot touch this. I had a wedding to attend my middle child’s so I made it through it and then headed to the 5 1/2 hour trek to let the dr trim the knot off of the dissolving stitch – he told hubby it was kind of like a fishing line knot. Lord hubby said, “yeah I told her I could trim it with my lil scissors.” Dr says,”Well technically we can’t recommend that? But yeah.” Laughing
Yes that is the 2006 Gastric Electrical Stimulator
