Welcome back to the dramatic life of Lauren the Great. I recently talked about my one year birthday with the Enterra gastric stimulator. This device is starting to spread throughout the nation, and I am so glad for that opportunity. So many people need this device, whether it be to gain weight or lose weight. Yes, they can actually adjust it to help with obesity. I have heard my hospital has implanted a good amount since my own. I recently spoke with my diabetic educator in New Mexico and she said they are implanting them there as well. That warms my heart more than you can imagine. I like to stroke my ego and say that I promoted it a lot which gained recognition for Medtronic, the manufacturer. Maybe soon it will be considered a treatment option as opposed to a humanitarian device. The rest of my post may seem to counteract much of what I have talked about previously, but no one really can understand the immense impact it has had on my life as well as my family's.
I realize it has been some time since I last posted and I definitely fell off my routine. Again, life happens as well as emotions. This summer has been difficult with my health and hotter than a Texas summer (pun intended). Late April or early May a migraine struck. I have suffered migraines for years, but they seem to be progressing. I used to think people were being dramatic when they said they had one. It seemed like every time some one had a headache they would refer to it as a migraine. I have seen true sufferers and some dramatizations. Either way, mine I now believe and have drastically progressed in the last two years. I eventually, after many attempts of at home treatments doctor recommended, gave in and went to the emergency room for IV medications, also doctor recommended. That helped ease it a bit but within days it roared its ugly head more so than the dull ache I still had after the IV. Since then some days are dull and some days are debilitating, more often the latter. The heat certainly doesn't help.
There are so many triggers for a migraine and everyone has a different experience or reaction. I, myself, had no idea what my triggers were due to my denial of migraines existing. This was a test-in-the making that hit like a brick wall. I tried hydrating. I tried rest in a dark room, which actually helps me at least rest a little more comfortably. I knew my eye glass prescription was old because I was always squinting so I went to an ophthalmologist. I need him more than an optometrist because he can check for diabetes complications of the eye, more specifically retinopathy. Luckily, I am good in that department. My prescription did change just a bit, but he also recognized some rigidity in my lenses. See, your eyes have lenses that are flexible so you can look far away and then look down at your phone or a book and your lenses adjust as you change your perception. Mine doesn't move that quickly. As a 31 year old woman, I need bifocals or trifocals for the no line lenses. I prefer to use glasses as opposed to contacts because I take them off throughout the day pretty often. It is also less maintenance in my opinion. Back to triggers, I tried cutting out foods I felt affected me. Lotions, laundry detergent, air fresheners as well because the smells can be a trigger. I avoid the sun. I consciously try not to squint or move too quickly. I try to keep my neck and back in the least taxing positions or movements. It seems like they are all triggers, including stress.
My neurologist has been seeing me frequently throughout the summer to try to get ahold of this unbreakable trend. At first she thought that we possibly went down on a medication, in an attempt to slowly change to a new medication seizure-wise, too quickly which can upset your nerves. A slight adjustment here, a slight adjustment there. That did not break this chronic migraine. We attempted emergency type medications. We moved on to some injectable medications because we thought absorption had been a factor, could still be. None of which seemed to help. Actually, the injectable gave me a rare side effect of severe drops in my blood sugar. Leave it to my body to head to the rarity and the blood sugar factor in a diabetic is not good. At my last appointment we agreed on a new approach, Botox, but she also told me some news I had and have trouble dealing with emotionally and physically.
In New Mexico I had been given "life timelines" several times. I had also been told I have an autonomic nervous system disorder. I always beat my "timelines" and will continue to break barriers. It did hit me a little harder this time around. I think I had myself on cloud nine and was in denial a bit. I was so glad to be in a new place with more food and life options, and I believed the stimulator's help with food intake would help my whole body. I still believe it is because it is blatantly obvious in terms of energy and symptoms due to gastroparesis. Hearing a "timeline" now knocked me down. Granted, hers was much longer than any previous and vague. It is bugging me a bit still, but I know my determination and tenacity. She has been talking about neuropathy over the last year, but never referring to it as "diabetic neuropathy". She explained to my husband that my neuropathy would cause personality changes, memory loss, and more that I cannot remember, but I can't totally contribute it to what she said. At this last appointment focused on my migraines and seizures, I brought up the fact that I have noticed some symptoms I couldn't explain.
For years, really around the time I got diabetes, I have had numbness and tingling in my extremities. When I would mention it, doctors and nutritionist would brush it off, saying it was too early in the disease to have diabetic neuropathy. In addition, my blood sugar control was too tight to allow the damage. Lately my balance is off. I do yoga about three times a week and am suddenly unable to do moves I have always conquered. That is frustrating and a little alarming. I have also been noticing more memory loss and trouble comprehending things I never struggled with before. Additionally, at the ER I had trouble doing the neurological exercises they often use for neurology patients. Days before, in a discussion with my husband, I was trying to count to four on my fingers. For some reason my hand was not cooperating. He had to physically move my fingers to show four. I felt silly about it all, but she was very serious. She explained that the neuropathy I have is an autonomic nervous system disorder and it is called peripheral neuropathy. This is not diabetic neuropathy, although I am at risk for that as well. Let's compare them along with fibromyalgia as well as I can with my limited knowledge.
Peripheral neuropathy affects the entire nervous system. It can be connected to diabetes, but mine was triggered at the on-set of diabetes or before. We believe before because pain and fatigue have been an issue for me for over a decade. It can be caused by many different factors which make it hard to pin point. Some of them include autoimmune diseases (I was diagnosed with Hashimoto's thyroiditis when I was 13, then the snowball began), diabetes, medications, alcoholism, trauma, pressure on a nerve, tumors, infections, vitamin deficiencies, hypothyroid, and connective tissue diseases. Many of which I have or had come across throughout my life. Determining the cause is not as important as trying to manage it. The damaged nerves can cause numbness, weakness, and pain throughout the body. The nerves in the peripheral nervous system or central nervous system send messages from the brain and spinal cord to all other parts of your body and back again. It can affect sensory nerves that receive messages like pain, heat, or even touch. It can affect your autonomic nervous system controlling most of the smooth muscles such as those involved with breathing, heart rate, as well as digestion. It can also affect motor nerves controlling how your muscles move. This will cause a wide range of symptoms. Mine include pain, weakness, fatigue, digestion problems, blood pressure and heart rate (mine are super low), lack of coordination, intolerance to hot or cold temperatures, and sensitivity to touch. These symptoms wax and wane, but reading my posts throughout gives you a good idea of the constant symptoms. Mine happens to be polyneuropathy meaning it affects more than one nerve.
Diabetic neuropathy is usually caused by high blood sugars over time. These blood sugars damage the nerves. Most commonly, it affects hands and feet. This cause pain and/or numbness. It can move on to other parts of the body such as the digestive tract, causing gastroparesis, bowel problems, urinary tract problems, and even move onto the heart, sometimes fatal. It can be avoided by managing blood sugars tightly. Some diabetics never suffer nerve damage.
Fibromyalgia can also be set off by trauma or infections and can be genetic. Researchers believe repeated nerve stimulation causes changes of chemicals in the brain. The abnormal increases in these chemicals may signal pain. This can also cause the brain to make a memory of pain signals often causing the body to be more sensitive to pain. Again, symptoms are similar to peripheral neuropathy, yet there is no damage to the nerves, only sensitivity. Women are more commonly affected. It can be genetic or related to a rheumatic disease, such as lupus or rheumatoid arthritis. Complications are usually lack of sleep due to pain, frustration, depression and anxiety from a misunderstood condition, and trouble focusing or completing tasks. It is often referred to as "fibro fog". So, you can see the connection with all three conditions.
It is certain that mine is peripheral neuropathy. That terrifies me. There is nothing they can do about it. Some medications manage the pain, tingling, or burning. I certainly do not expect a magic pill to fix all. I would prefer to not take any medications at all! She did some routine exercises in her office as well. I realized many of the tests I previously completed with little or no difficulty, I suddenly had trouble completing. In fact, on a funny note...or funny to me, I will absolutely fail a field sobriety check if ever pulled over for suspicion of DUI (I do not drink and haven't had the experience). I tried and tried to walk a straight line, one foot in front of the other, and stumble time and time again until she just moved me on to something else. I walk with a different gait than most people. I am not pigeon toed and have never had an unusual gait before. Now, I walk with my feet in a "V" shape. That, she explained, is unknowingly trying to keep balance. The memory and comprehension are just bonuses. Again, she repeated there is nothing she can do but monitor it. It will only progress.
At this point it is important to stay alert to the symptoms. Because I am struggling with recognizing symptoms and they are only progressing she suggested a caretaker. There is no need for a live-in caretaker or even a 24 hour caretaker. I just need someone to check in with me and be available for the tough days or emergencies. I am often alone with my son so he has been taught who to call, how, and when. He will not be subjected to being my caretaker. He is a kid who needs to be a kid. I am sad he has to witness and live this volatile life with me. It has its bonuses, however.
He is wise beyond his years. He is compassionate, empathetic, and caring. He is sensitive, which can cause problems especially for a child who is eight years old. He actually comes home from school with his feelings hurt by something a peer said or did during the day. He can't understand how they can be so mean. He can't understand why they do so many things they do. It is just not in his realm of comprehension. It is amazing how he thinks about the world. He can teach us so much. He sees the world in such a magical way.
I saw my primary care physician just today. I lost weight, which makes me mad. I have been eating plenty. With the summer heat I have been enjoying vegan ice cream on a very regular basis as well as these giant soft, gluten free, vegan chocolate chip cookies. Both have always been a weakness my entire life and now I have found them in my diet allowances. Woohoo. I cannot believe I am still struggling with weight. An issue many people would love to have, but not to the point of being underweight. Believe it or not, under weight people feel similar self consciousness as over weight people. My primary is concerned about my heart rate and blood pressure. I am now instructed to monitor my blood pressure and heart rate much like I do my blood sugars. I have been having these rushes of faintness. I have not lost consciousness completely and I am glad for that advantage. This comes with cold sweats and anxiety or panic. I think my blood sugar is low because the symptoms are similar, but when I check it is fine. She believes this is a result of low blood pressure, and the symptoms come on so quickly because my blood pressure has dropped quickly. I have been worried it may trigger a seizure. Luckily that has not been the case. She said there is a few medications that can help raise blood pressure, but I would like to avoid additional medications. She still suggested what she called " a benign" medication meaning less side effects. We will see how this turns out. I pray no medication is needed and lifestyle changes can possibly help.
With all this I have been so overwhelmed. The fear of what my body is doing on the inside. So many what if's. I have relaxed a great deal just having a tangible reason for what is happening. The what if's are lessening knowing that there is no concrete path. Everyone is affected differently. A doctor is only as smart as the information they have learned. The body is so much more complicated. The body knows itself better than any doctor. As I mentioned earlier, I have broken barriers doctors said would not happen. I have a determination to move forward. I see no reason why I should be concerned about leaving this earth when I know all of us only get so many trips around the sun. Enjoy the sun while we have it, right? My mission drove me to pistachios, ice cream, and puffs which are similar to Cheetos puffs (my old fave). My stomach can only fit so much as anyone else's, so work with what we got. Food, sometimes, is a fix all. The management will continue and life goes on. Focus on life not the management of the unmentionables. I need to give the diseases a collective name like......Bertha, and only refer to them as that name. "Bertha is on fire today" or "Bertha has been out of sight for a while" or "eh, Bertha has crashed my party" or happily "I beat Bertha to the punch today". Yep, from now on. Make light of things. Laughter is the best medicine. That and distraction. Loving it.
I do want to stress that this blog is not only about me. I share the information I know and my experiences. This blog is to connect with people. It is for me to gain knowledge from others. It is to share our experiences and learn. It is a place to be vulnerable yet vindicated. It is therapeutic for me. I don't share a lot of information vocally, but can lay it all out here. I don't have a road map for life. This is where I help guide my thoughts and actions. It is meant to bring joy and be open to new perspectives. I certainly do not want or mean to be a downer and believe me when I say I am happy overall. I have a great support system. I laugh and enjoy my son, music, and sports (yay football season, basketball soon to come). Everyone gets down. Everyone gets worrisome news. Life is about surfing the wave.
