On Mother's Day my son received his First Holy Communion. Although, I myself am not Catholic, I understand the importance and honor so I am so proud of him. (We will no longer discuss religion). Needless to say, the few weeks following up to that were very busy. I was worn down, for sure. It was also near the end of school when the kids are stir crazy. For a few months prior, I felt like I wasn't having as much movement in my stomach. The last time my stimulator had been adjusted was in November. I had a check-up in February, but the symptoms were somewhat brushed off. I knew it may be par for the course. For some reason, maybe the peak of stress, that weekend I instantly felt like I had before I had the stimulator.
Friday night after dinner I was doubled over in pain. We had gone out to a restaurant I frequent, but it is not completely gluten-free so cross contamination is a possibility. I assumed I had been "glutened". The next day I opted for a smoothie at lunch. With family in town for the big occasion, the girls went for a manicure/pedicure afternoon. While drinking the smoothie during the pedicure, I already felt symptoms of pain and bloating (this kind of bloating is not and does not feel like common bloating). As the day went on it seemed to get worse, but I knew there was no contamination. We went to a restaurant that is a real treat for me that evening. It has very strict procedures to avoid cross contamination. I ordered fish and chips which is high fat, low nutrition, low fiber, bad carbohydrates....but we all deserve to stray. Immediately, I was in pain just walking out to the parking lot. Again, I thought I had been glutened. Or, I thought the sudden feeling of being overwhelmed by family, a lot of activity, and a big stray from my body's normal routine may be too much.
With my routine being off, as many of us do, I was thoughtlessly neglecting some important factors of my life. I would accidently forget a batch of pills I am supposed to take at certain times of the day. That is SO important for seizure medications. And of course, different medications all metabolize differently, etc. You know the story. The increased activity and lack of rest wears on my body pretty badly. Add to all that, the manufacturer of a probiotic I have been taking for years now suddenly stopped making that probiotic. My local health food store tried to match it's quality with something else. They did supply me with a new probiotic, but unknowingly, it had dairy. A bad storm was at my door.
After the exciting weekend passed I did my best to get back on track. I assumed all my symptoms were directly connected to my choices those past few days. I had chalked up the prior, more mild symptoms from the previous several weeks to my fantasy of this wonderful device. I was reminding myself it is just a humanitarian device, not treatment; do not expect perfection. As soon as I noticed the dairy in the new probiotic, I immediately stopped using it. The notation was in the tiny print on the bottom of the bottles because there are very few guidelines for supplements and their labels. I just doubled up on an over the counter probiotic I know works very well for me. I knew it would be a few weeks until I would know if it was working in my new system. I tried to get back to my usual diet, but I wasn't strong enough. My mother-in-law stayed with us for a while after Mother's Day weekend. She loves to go out to eat and she enjoys dessert very much. She is allergic to wheat so it works out ok for me. I fell to the guilty pleasures. I also was allowing myself to relax a little. See if my body can be pushed a tad with regard to my diet. It didn't seem to like it very much at all. There were other factors in this complex equation as well.
We all have our limits, our pet peeves, our comforts, our space. As much as I love my mother-in-law, I had agreed to more than I can handle. She was supposed to stay for six weeks. Part way into the first week, my buttons were being pushed. I was trying intensely to smother my reactions because she deserves time with us, being further away now. Things got tense as the days passed. My husband works full time and my son was still in school so I was with her for several hours a day, just the two of us. That was difficult, especially when I am used to having down time for those few hours a day. In that stress, I again was missing medications and ignoring my routines completely. I continue to speak of routine because it is one of the best ways a diabetic can control blood sugar and my belly works on a routine as well (Lord, how I wouldn't love that to relax a bit). This is so dangerous. For anybody on medication, be strict with yourself. I was risking seizures, severe nerve pain throughout my body, and making my digestion practically impossible. So all this time I have a million excuses for why I felt so awful.
I finally decided to be a little vulnerable and put myself first until it fell back in to my multi-tasking life. I asked my husband to take his mother home. I felt she had spent some good quality time with us, but it was now pushing boundaries. He agreed. It ended up working out the best for her that way too, because her sister was ill and she wanted to get back to her. It worked out for us all.
Unfortunately, I still didn't get a chance to stop to breath. It seemed as though it was one thing after another. I was falling back into my routines food and medication wise, but somehow stilled missed doses every now and then. I had to take accountability for that so my feeling of malaise was not a surprise to me. I was on the edge of an important reminder. There is a difference in taking accountability and blaming yourself. Some things are out of our control.
It all came to a head one Sunday evening when life had finally felt on track for a few days. My husband grilled some fish for us and I made some oven-baked sweet potato fries. I had been trying to work fish into my diet because most meats are too difficult to digest while fish has the added benefit of incredible nutrients. When that meal was over, I knew something was really wrong. I, again, was doubled over in pain. My stomach was rock-hard and I looked as though I was half way through a pregnancy. I made my husband take a picture so I could so my gastroenterologist. The next morning only confirmed my fears. I was incredibly nauseous, as if I hadn't even been diagnosed with gastroparesis. My mouth was dry and I was so thirsty. No matter how much water I drank, my thirst couldn't be quenched. Everything tasted disgusting, bitter, almost metallic. I wanted nothing at all and all the water was making the nausea worse. By Wednesday I called my doctor.
Once I described my symptoms I could hear in his voice he too, knew something was wrong. He was booked but tried to get me in as soon as he could. Not only was he concerned about my nausea and lack of appetite, but he was also worried about infections. When I got in to see him I was doing somewhat better with less thirst and dry mouth, but still feeling awful otherwise. He did a usual physical exam and then wanted to check my stimulator. He brought out the Enterragator (I love the sound of that, like a superhero). There is a little plastic disk I place on my skin where the device is located. That disk is attached to a machine that looks like a label maker. He instantly had a look of confusion on his face. Now, I don't completely understand the lingo for this device whatsoever so forgive me if this part is vague. Basically, he had discovered that the stimulator had actually reset itself back to the settings they had first put in during surgery. That was minimal voltage to allow my smooth muscles the chance to work up to movement, let alone digestion. That meant a lot of my symptoms were because I was back to little or no movement of my stomach. This was a mystery to us all. He did also send me for a lot of lab work.
The next week I saw my endocrinologist. I was surprised to hear that through all the chaos, my A1C was 6.5. That is great because the closer diabetics are to 7 or lower, the less risk we have for complications. He also had no complaints about my blood sugar trends so he made no adjustments with my insulin. By downloading information from my pump and glucometer, he can see how my blood sugar levels are throughout the day usually looking at the last ninety days. With all the missteps I had made in that time, I had managed to do better than I had thought. Again, a blame I placed on myself. He checked the labs my gastroenterologist had run which included my A1C and my thyroid levels. Everything was normal which also meant there was no infection. My symptoms had some to do with me getting overwhelmed and letting that run me over while some had to do with the hiccup of my stimulator.
I was hopeful that soon I would feel a lot better. When my doctor had initially turned up my stimulator it made me more nauseous. While I was able to eat without pain or distention, I had no appetite and felt like my stomach had butterflies that were moving too quickly. I knew that would pass as I got used to the increased movement. My appetite slowly began to come back. I relaxed about my blood sugars, being more confident in my abilities. Then, for a few days I felt better. A day of fun with my son sparked a new hurdle.
My son and I share a passion for music and love for pushing our bodies physically. Are we weird? His cousin is a star gymnast at the ripe ol' age of eight so he likes to try out her tricks when she is not around. I happened to be in gymnastics when I was a child, but never made it very far. I am flexible and athletic though, so the few basic movements I remember coupled with my own childhood body contortions, I share with him. He had bought himself the new Michael Jackson CD (his idol) and we were having a blast listening to it while be acrobats in the living room. Once I was beat, it was time for dinner so I made my way to the kitchen. Suddenly, I felt faint to the point of feeling like I could pass out at any moment. I swigged some OJ quickly and grabbed my meter thinking the extra activity had run me low. My blood sugar was fine. Hhmm? As I went about making dinner it swept in and out, but I really felt weak. By the end of the evening I had a headache. I knew I had done too much.
Over the next few days this rush of faintness continued to pester me. I continuously monitored my blood sugar never seeing a low in these times of weakness. The headache increased and never stopped from the moment it started. I do have chronic migraines associated with my seizures so my neurologist has me on prevention medication as well as an emergency medication I can take at the onset of a migraine. After a few days, I realized it was an intense migraine and those feelings of faintness that now included cold sweats, were the aura. I needed to call the neurologist. That's exactly what I did. She told me to go ahead and take the emergency medication. If within a couple of hours it doesn't help, she instructed me to go to the hospital for IV medication. That was the last thing I wanted to do. I took the medication and waited. I gave my body a little while longer than she said, justifying my decision with my malabsorption. I told myself it had made a dent in the pain. I believe I was delusional. My husband was at work at the time and the next day he had to work open to close so I did not want to inconvenience him. Again, I had forgotten to put myself first.
Days passed with the pain still there and me deteriorating. I was weak, could not be in light, could barely handle sound, nauseous, and sleeping so much. I kept thinking I needed to give in and go to the hospital, but talking myself out of it each time. Hindsight is 20/20. I was really walking a tight rope. That Sunday my son had opening day for his basketball league this summer. I could not miss that so I did everything in my power to work up the strength for those two and a half hours. I made it that day. I did feel some improvement in pain and some increased strength so, again, I jumped the gun on thinking I passed the danger zone. It is Wednesday now and I still feel remnants of this everlasting migraine (I have had longer and worse before). My eyes and neck still hurt. I can handle very little noise. I am definitely irritable. So, when will this cycle stop?
Yesterday a light bulb went off in my head. Remember how I stressed the importance of timing with seizure medication? Well, it is also important not to miss a dose as that increases the chance of breakthrough seizures and/or migraines. Ding, ding, ding. My body has been put through the ringer for months now. I was pushing its limits. I was stressed out. I allowed myself to succumb to the thoughtlessness that a healthy individual can escape to when a special occasion arises. I missed the small print of dairy. I pushed aside nagging symptoms. I missed medications. I messed with the routine my body is most efficient in. As a patient I fell off track and blamed myself for the uncontrollables that were also part of the equation.
Let this be a lesson to us all. There is a reason for the labels on medications. Follow them along with your doctors' orders. Cut yourself some slack or the diseases take over you. We all know our bodies, healthy or not. I have said it before and will use it again, our bodies are smarter than any doctor out there so find a balance. I ignored so much and justified just as much. Now, and for a while, I pay the price. A song I love says, "if you're ever gonna find a silver lining, it's gotta be a cloudy day".
Although, in the midst of my wallowing, I was unable to get my ten month anniversary/birthday post for my new life with the Enterra gastric stimulator. Today marks day 336 on my journey to the one year mark which marks full estimated recovery time and a clear view of the device's effectiveness. I do believe my bump in the road will affect that a little bit for a short time. But nonetheless, I am here. Eleven months. One year as a resident of Texas. A rug ripped out from under my family and I has brought us to this point. This point of laughing and a little freedom. This point of about 15 pounds gained since surgery. This point I kind of take for granted until those past symptoms creep back or slap you in the face. Who can deny, this is amazing? I cannot be more thankful for the opportunity I have been given. I will do my best to stay conscious about its worth in my life. With that in your hand, it is like a diamond you never thought you'd see.
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