The dreaded slump. I have not written here or even on my personal journal for a few months now. I have had a difficult spell. I had no way to express it. I had no way to release it. I am still trying to regain my footing. I am constantly told I am brave for being candid with my writing. Although, I do not see this as bravery, I see it as helping others. None of us live in a perfect life. No one person is in total bliss every single day. I am here to allow people to open up, ask for help, seek knowledge, and to find pride in who you are, good and bad. I will tell my story behind this screen, all alone in comfort and find solace in the end. That's how brave I am, in hiding.
Many people suffer migraines. Some suffer what doctors call "chronic migraines". No matter which someone experiences, it is never good. Since I was a young child I had no real idea what a "migraine" was or how it felt. I had been told, probably because at the time it was age appropriate, that a migraine was like the worst headache you can imagine. I had had headaches and thought they were bad so I assumed people were being dramatic if they said they had migraines. I was taught in a very strong fashion that I was very wrong and uncompassionate.
For several years now, going back to when I was seen at the Mayo Clinic in 2008 and before, I had had some bad headaches. I would sometimes feel a stabbing pain in the left side of my head. I often saw black spots or bright flashes in my vision. My neck would get stiff. I would complain to doctors, but was always told they were tension headaches. Being ill and stressed was causing these headaches so I needed to relax. The other symptoms were brushed off. I told myself I was overreacting. That is, until August 2012.
I was getting ready to volunteer at my sons school as a requirement of all parents. Only an hour a week in the lunch room and my hours were covered throughout the year. The thought of this was frightening to me. I am not the most outgoing person in the world, nor do I handle new people and situations smoothly. Inside I am a mess. While washing dishes all of a sudden like lightening a bright painful white light hit me like a camera flash, then sudden sharp pains throughout my head. I blinked and blinked while squinting as you would for a camera flash, but it didn't help. That headache lasted over a week and I eventually ended up in the emergency room. I had suffered a migraine. My neurologist determined I had been suffering migraines for years. The seizures took the spotlight, but migraines are also treated with seizure medications sometimes so the migraines had been pushed under the rug. I have now gotten to know my triggers, the feeling of onset, and how to push through. Mine have become chronic, meaning I have them for days or weeks on end some occasions but always more than half the month I have a strong migraine. No one who suffers migraines is being dramatic. They are horrible.
Last May my son had his First Holy Communion. Family was coming in to town and there were activities non-stop for about five days. About two to three weeks before, a dull migraine had come and gone, but just as everyone showed up I was in the worst pain. The kind of pain that leaves you nauseous. That pain never subsided even after everyone had gone and things had calmed down. It was soon summer so obligations tapered off as well. Nothing touched the pain. By the first or second day of July, I was in an ER. Sometimes the oral medications do not work for me due to absorption. IV medications are always a last resort. My neurologist and I spent all summer and early fall practicing trial and error, still to no avail. At this point we are waiting on Botox injections.
She explained to me that the Botox is a diluted, slightly different version of the commonly known Botox for cosmetic use. Injections are given around the hairline, some near the crown of the head, and some in the back of the neck near the base of the skull. This is to relax the muscles in an attempt to break the migraine cycle. Migraines are similar to seizures in terms of the activity of the nerves throughout the brain. These nerves cause muscles around the head to contract but struggle to relax. The nerves are also hyperactive, trying to send messages properly. The Botox helps calm things down. Due to logistics I have yet to experience this treatment. With that being said, I have had a really hard time opening up because I feel so crappy.
I hate to be that person who is a complainer, "Oh woe is me" all the time. I feel like I am that person. I tend to bury my head in the sand when things get tough. It is human nature to alert others of our suffering, but no one needs an update everyday if the complaints are the same. As an example with no disrespect, similar to a man with a cold. Sometimes I feel as if I have no light words to contribute to a conversation so I choose to hide the deep stuff. Hence my retreat.
In September I was set up with a new primary care doctor. She is wonderful. She decided to refer me to all the specialists I do not already see on a regular basis, gynecology and a urologist to follow my IC. Both of which I have avoided for obvious reasons. First came the gynecologist. While doing a routine exam she came across something that alarmed her. She sent me for labs and asked that I return the following day for an ultrasound. I was told that next day my labs showed possible polycystic ovarian syndrome. I have a friend I watched go through the diagnosis about a decade ago which seemed so difficult and scary. I was crushed. The ultrasound was done, but it seemed to take a little bit. As I was walking to check out, I could hear the doctor and ultrasound tech talking about me with concern in their voices. I returned the following day (are you exhausted yet) as requested again by the doctor. At that appointment I was told they found a mass. They found a tumor. A brick straight to the face, bam, and I froze. She explained the details and what would be coming in the following several weeks. At that time I was told a uterine biopsy was needed. In the office right then and there they took a tissue sample from my uterus. A little painful but tolerable. Then, wait for results.
I soon was seeing a gynecologist who was well versed in surgeries to remove cysts and masses possibly including the entire ovary. He was such a gentle soul who reminded me of a mix between Elmer Fudd and the Pillsbury Doughboy. The biopsy had come back fine so an ovarian biopsy was not needed at that time. He explained that this mass was a "complex mass" the size of a golf ball on my right ovary. It was a tumor. He decided to try some simple progesterone pills. This is a hormone that helps regulate menstrual cycles and many other womanly needs. The idea was to see if my own body would break up the "complex mass" on its own. I impatiently waited the five to six weeks to return for another ultrasound. If the mass had not budged or had grown it would need to be surgically removed and biopsied.
About six weeks after hearing about all of this for the first time, I was back in his office sweating it out. He greeted me as welcoming as the first time. With his squinty eyes and a contagious smile he said, "It's gone. Most of it has broken up so there is no need to follow it unless you experience problems." Like a balloon deflating I relaxed and my mind just floated. I did ask about the PCOS and he told me the mass was affecting my labs. I had no other symptoms so "No. Ya don't" with that same smile. I said my "thank you" and "so long" and hightailed right out of that office. Something huge had been lifted off me and I was ready to conquer the world again....as soon as my energy returns and the migraines slow. Haha
And then....you knew the and then was coming. In late October, early November my mouth felt like I had been punched. I brushed it off for days thinking I did something strange and it would work itself out like a crick in the neck. Well, days passed and there was no relief. I asked my husband, a man that steers away from dentists at all costs, to look inside my mouth. He said, "You need to call a dentist. Something doesn't look right." I put it off for several hours because I was sure it was nothing, but I eventually broke. They saw me within an hour and within 30 seconds the dentist said, "you're going to need surgery". My lower gums and lip had detached from my teeth. If I were to leave it alone I would lose those teeth. Now, I am the kind of person who flosses and brushes every day. I go to the dentist every six months for cleanings. Surgery?! What?!
I procrastinated but went to the surgeon's, periodontist's, office the next day. When I first sat down in his chair he said, "We need to do this today". I had to call my husband at work, he had to get our son out of school and meet me at the office. The periodontist performed a gum graft. He took tissue from the roof of my mouth and placed it across my bottom front four teeth and brought the lip in to reattach it. I lost count of shots, time, and stitches. I was told that my connective tissue inside my mouth finally gave. My body could no longer fight there. I lived on a soft foods diet more restricted than my gastroparesis diet. By Thanksgiving I called to ask if I could eat some more solid food. Thank goodness he said I could have what I could tolerate. I still had trouble talking, smiling, laughing, and puckering my lips but who cared at that point.
November was a month of rebuilding. My body had been through so much, it needed to calm down. I had a minimal amount of appointments and tests so I was able to decompress. With my mouth recovering I was forced to relax. Who'd imagine I need that? My son had the whole week off for Thanksgiving. It was really nice. We had slumber parties in the living room, watching movies and playing games until we crashed. Thanksgiving day was full of blessings. An impromptu dinner was made throughout the day for my family and me to enjoy. I had had so many migraines and belly aches that I had no intention of cooking. I cannot eat what everyone else can so it was a lot of work for just one child-sized meal. My boys would get a traditional Thanksgiving at my cousins' house in the evening so I had no obligation. The sun rose that Thursday and I decided to make the most out of the holiday. By 2pm I had a full meal of meatloaf (easily broken down meat for digestion), roasted rosemary and garlic potatoes, green beans, and corn bread. We bought a chocolate cream pie for my boys. It felt so comforting not exhausting. We later went to my cousins' where there was turkey and stuffing and pies and drinks and family. Just a beautiful day of happiness.
December rolled in with Christmas in tow. My endocrinologist has been pressuring me to get a continuous glucose monitor. I put it off because I had one for a year or two about eight years ago and I hated it. It beeps at all hours of the night and day. It was painful to insert and to have under my skin. The adhesive tape was brutal and I had to change it too often. So his suggestion fell on deaf ears. Over the summer, with the terrible, unbreakable migraine, my blood sugar was all over the place. Lows sometimes in the low 30s upper 20s (severely dangerous) and highs up in the mid 300s (only makes headaches worse) were starting to frustrate me. I had the experience of watching someone go through the early stages of the monitor I wanted and eventually decided it was worth a shot. I had been told within the past few months that my insurance wouldn't cover it. When I actually called the company, Dexcom, they took care of it and found out that my pharmacy benefits were going to cover it. I received my Dexcom early that next week. I am actually pretty ecstatic about it. I knew I needed better tracking of my blood sugars, but another apparatus just made me hate this situation more. Once I got over that mental hump, I was good to go. So, by the time I got it I was elated. That was only on December 16th so I am working on balancing what I've got on my body. That in itself, was the best Christmas gift I could imagine. Health is priceless.
With all these non-stop unexpected blows, my psyche is ravaged. I have been an emotional wreck for a time I cannot even count. Lonliness. I only lived in New Mexico for the past 30 years. I have not worked in four years. I have not been to school in over six years. There is limited opportunities for me to make friends, especially at this age. I know only family in Texas so I have no fall backs. Many of my family members live further than I am comfortable driving, although it is all in the Dallas/Ft. Worth area. They have full lives with their own schedules and plans, as they have a right. I am not the type to invite myself to join anything. I am not the type to talk small talk with a stranger. Not feeling comfortable opening my life up to many leaves me in a tight situation. Guilt. I lay in pain on the couch with no energy while my son wants to ride his scooter or go to the mall. My husband gets off work to get home to a dog who needs a short walk, a son full of energy and conversation, and a wife lethargic on the sofa. I can't travel. I can't be very spontaneous. I can't eat at just any ol' restaurant. I feel as though I drag them and everyone around me down. No one will admit how annoying or frustrating it is, but it must be. Anger. Every time things seem to be stabilizing, a ball drops. I want to be better for my family so I will try harder tomorrow. Tomorrow finds a new ailment. Frustration. See above, need I say more. And the fight for happiness. Who wants to be miserable? I want to find peace so happiness can flow freely. Sadness. In the depths the what-ifs always show their ugly faces. If I had been allowed to finish college I would be doing the work that is done to me so often. If I could make my own money independently we would be so much better off and the pressure would lighten on my husband. If I was healthier I could do all the activities you see a mom do with her child in a TV movie. If, if, if. If I could travel I wouldn't feel so stifled. I wouldn't feel so lonely. Grief. In all those what-ifs there is a sense of grief. In my mind I am the person I set out to be and always was, in realty that girl is gone. The activities, the food, the freedom, the physical strength and stamina, the availability of continued higher education, etc. is all gone. It is a mourning as if someone has died. And someone did. But someone new emerged.
Someone new emerged. Amazing words. A new perspective. Now I am kinder, more knowledgeable, more compassionate, more giving, more practical, more open-minded, more determined than ever before, and a better mother because I know what I could be missing out on. I work just as hard seeking out knowledge as if I had been able to continue higher education, and my quest never ends. I hunger for information, any not just health. I love to learn and it is not necessary to be in a classroom to do so. I am finding new talents, for example, writing. I am learning a whole new level of patience, but believe that will be an ongoing process because perfection is constantly changing. Speaking of perfection, I am working on loosing up a bit. Being a perfectionist is impossible. There is no room for perfectionism within the life I lead. Why should I waste so much energy beating myself up? This new person that has emerged is equally new to me. Years pass and I am still working on acceptance. I am still getting to know me, Lauren, and finding myself in the chaos. I don't think my dust has settled, but I look back and think "how long are you gonna take to catch up". Haha
And yet, I read this and know deep in my heart that I am not the only one who feels this way. We all have different lives and different perspectives. We all have our own joys and pains. We all have our skeletons and demons. We all are a constant work in progress. As a child it is never a thought in your mind. For myself, I knew as a child that things would constantly be changing as I got older so I embraced the change. Some time in high school or college or later, we all unintentionally dig our heels into the ground and think we no longer have to change. We look back and want what we had and hold on to every last fiber as long as we can...sometimes too long. For myself, I feel it has been to long. I seek my inner child. I read this and realize, I am still being too hard on myself. I am being a hypocrite when I say perfection is unattainable and still think thoughts of how I NEED to be instead of letting go and letting these words sink in. This is part of the purpose of this blog.
It is an open journal to the masses. When I put it that way it frightens me to share so many issues, thoughts, and feelings. I sought out something similar to this when my knowledge and emotions were so low with my illnesses. I wanted validation for my devastation and fear. I decided to write this blog as I walk through life so if in some way, some how someone finds comfort in this then I am doing what I intend to do. Please know that you are never alone. Know that someone else shares whatever pain or joy you do, you just don't know it. Find peace in that somehow. I will work on doing the same.
Showing posts with label migraine. Show all posts
Showing posts with label migraine. Show all posts
Tuesday, December 30, 2014
Wednesday, September 10, 2014
Surfing The Wave
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.
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.
Monday, September 24, 2012
An Escape
Today I am letting go of all inhibitions....or the majority of them for this post. I try to stay positive and always look on the bright side of things. I have said over and over, there is no other way to live. We would not not want to live in a world where the cruelty and pain take over the beauty and greatness. In situations where I feel knocked down by all angles, I tend to have a very hard time keeping that positive outlook. Right now is one of those times. Rather than internalizing all these feelings, as I usually do, I am hoping that letting them out here will prevent any lashing out to loved ones that may or may not be misdirected.
For some time now, since the end of August, I have been dealing with this incredible headache and what I can only describe as strange episodes. I do have epilepsy so there is a clear history of seizures. Although, I do not tend to get an "aura" or any indication that a seizure is coming on, I can usually tell if one is imminent in the near future (possibly days or weeks). These episodes have not been seizures, in my completely unprofessional only-a-patient assessment. There are periods of confusion and disorientation. There are sometimes feelings of light headiness, dizziness, or a sensation like the earth has been ripped out from under my feet. Those are all brief, seconds to half a minute at the most. There are some flashing lights, bright lights, painful lights, sometimes along with tunnel vision. The hardest part is the headache. It is unrelenting.
In August my rheumatologist and endocrinologist suggest I talk to a neurologist (which I already have) for some other concerning issues looking more like neuropathy. When I described these most recent episodes, they suggested I get in touch with my neurologist right away and let him know. I did, thinking my seizure medication would only be increased, but instead he prescribed a dose of steroids. My neurologist is very good at making decisions without explaining them to the patient. I had no idea what the steroids were for, only that I was terrified to take them due to my diabetes.
I looked information up online using my symptoms and the steroid treatment he had given me. My research kept leading me to sights about vessel inflammation in the head or brain. The most common cause of this would be migraine but the more serious concern would be an aneurysm. That completely frightened me because I had mentioned the initial episode to my husband and explained to him it felt like something had popped or burst. I tried to push that all out of my head because it would all be too overwhelming to think about. Plus, I am in the care of professionals, so let them do their job and I will do mine.
I finished out the bout of steroid meds with little to no relief whatsoever. I waited it out a few more days. I tend to avoid taking any over the counter meds because I have so many prescribed, why add more to the mess? With no relief in sight, another episode happened. By that I mean, I had been having them throughout this period of time, but this particular episode was similar to the very first in late August. I was very disoriented. My head was throbbing, and these lights would not leave my vision no matter what I tried. I called my primary physician and she sent me to the ER.
My husband rushed home from work and took me to our local ER. There I was treated as if I had a complex partial seizure rebounded into a migraine. I was given some medication for nausea as well as a muscle relaxer. Within a few hours, I was let go as the pain let up. All I wanted was to be at home with my son.
The next morning I woke up feeling slightly better, but extremely exhausted. By about mid morning the headache had returned. This is into the third week. After a few days debating whether I should call my neurologist (he is 3 hours away), call my primary physician (I am so tired of doctors), or try to self treat I finally called my primary. Accidentally, I dialed her personal cell. That turned out to be just what needed to happen because I did get to talk to her directly, rather than through a nurse or receptionist. Initially, the week or so before when I was sent to the ER it was in hopes of getting an MRI or CT scan while one of these episodes was occurring. That never happened. I was only medicated.
My primary decided she would order the MRI she initially thought we needed, but in the meantime she prescribed a muscle relaxer to ease the pain and allow me to get through my days. I am certainly not a pill seeker and pain medication is something I cannot take.
Today, exactly one month after the initial bad episode and the start of this terrible bad dream I went in for the MRI. Unfortunately, some blood work needed to be done that had not been ordered so the MRI was done, just not the exact type my doctor wanted. Frustrating, but I am hoping they find something (small and easy). I am trying to not think too much into all of this. Compartmentalize and let the professionals handle it.
In the meantime, I am still a mom and a wife. My inlaws' side of the family had a family crisis at the same time, with an aunt being placed in ICU. It was terribly frightening and tragic, but I am glad to report she is doing well now. I can tell you she means an awful lot to myself, my husband, and my son so that wore us down pretty badly. She was so ill, I felt like I had no place to complain or even show that these episodes and doctor visits/ conversations were frightening me. I also wanted to be sure I was there 100% for those closest to her. If I could not do anything to help, the least I could do was the tedious tasks that life still throws at us all in times of crisis.
Now, as I said, our aunt is out of danger and in the stages of recovery. She is doing really well. We have fallen into a routine for school, tae kwon do, and soccer for our six year old. My husband's job seems to have stabilized his schedule a little bit more so that helps all around as well. I even said to him this morning how happy I was that things were seeming to smooth out so maybe I can get back to feeling a little more like myself soon.
The problem I am having; and, let me be honest, I have struggled with this from day one with all these health issues, is a terrible fear of abandonment. I talk a lot about feeling isolated. I feel isolated by my limitations as well as the general misunderstanding of my situation. I am not very comfortable being open with people about it. To me it sounds so out there and inconceivable, I can't imagine what others must think if I even give them a glimpse of how my body works. I know for a fact that if I heard a woman telling me this story in casual conversation at the park for example, I would think she had some serious mental issues and was seeking attention. I would blow it off, and possibly avoid her if I saw her again. That would have been me 5 years ago, before I realized real people deal with real issues all the time even if it does not show on the outside.
I know I am loved. I know I have a good support system in the small circle of friends I have along with my husband, my son, and our extended family. I know in many different situations there would be someone I could reach out to if I needed. I know when things get tough, most try to show their support even with distance between us and hectic schedules. The thing is, to me, it feels almost forced.
I, like all of them, love them so much. The people I surround myself with and keep close are there for a reason and that is because I want them around. I care for them. I think of them often. They make me a better person some how, and that makes me appreciate them. I assume the feelings are mutual. If not identical, there are equally good reasons they have love in their hearts for me. For that, I am grateful.
Everyday that I wake up and face another day, I think of how nice it would be to not have to worry about the things I worry about on a daily basis. We all have worries, but I remember the worries I had before these illnesses and the drastic change my life has taken. If it were up to me, I would not change a thing because I have learned so much from this all. I believe it has definitely made me more open, understanding, compassionate, and appreciative. But, if it were up to me, I would walk away.
I would walk away from all the health struggles. I would walk away from all the limitations it has placed on my life as well as my family's life. I would walk away from the sacrifices I have had to make to accommodate theses illnesses. So, in my head, I do not see why anyone else would not want to do the same thing.
My 20s were stolen from me by diseases that were out of my control. I did not get to turn 21 and go out for a celebratory drink. I do not get to go to a nice restaurant for a date. I don't even get to go to a restaurant for a random 20s birthday. I do not get to go to bars or clubs. (None of which I was interested in before, but I'd like the choice for myself)
My son is now six and starting sports and making friends. He does not like to leave me very much because he worries about me. He will only stay with one grandma over night, no one else.....and she lives 3/4 mile down the street. He is in tae kwon do, but the tournaments are 3 hours away. I have trouble traveling and without a job, we do not have the income to go to these tournaments.
My husband is only 30. It is football season. I love football, most sports really. I love to watch sports with my husband. But, he is 30. Every now and then he wants to go to a sports bar and watch the games or have a friend over to watch the games. He forfeits nights out with his friends to spend nights in with me, even though I am usually asleep by the time our six year old is in bed. He withholds invitations for his friends to come to our house to watch the games because he knows it will be too much on me.
These illnesses have taken so much away from us. They have taught us to be better parents and better spouses. They have taught us to be better people. We listen to one another and think of one another more so than most young couples. We communicate on a level even older generations have not mastered. We have our own share of problems, but we have so many good things. I just feel like these illnesses are taking too much away from everyone around me!
I want my son to have a typical childhood and enjoy more time with his friends doing kid things. I want my husband to not worry about me and our finances so much. I want him to be able to spend Monday Night Football out with his best friend for a drink and some unnecessary vulgar talk amongst men. I want my mother in law not to have to call every single day when I am alone to make sure everything is OK so she can go about her day. I want my friends to not worry about bothering me when I am tired, or avoiding inviting me some place because they know I will not go. I want all of these things. That is not my life though.
This is my life. I am happy in it. I am learning to accept these difficult things. I am OK with missing out on so much. I would prefer to spend every waking moment with my son or my husband. I would love nothing more than for them to be infinitely happy and just know how much I love them. But I need rest. Any moment I have that is not obligated to a mommy duty or a wifely duty, I want to read a book in bed, or watch trashy television, or sleep. I do everything I physically can in a day, and beyond that, I just want rest. Sometimes even talking exhausts me.
I do not feel that anyone around me really enjoys any of that. I appreciate them giving up their time and energy to be with me. I appreciate all the sacrifices they all make. I appreciate, especially, the things they do to show me they are thinking of me even when I am not around. I appreciate the fact that they are all still here, even through these tough years. I just do not believe that they want to be. I believe they want to live the lives they are capable of living. And that makes me feel AWFUL.
I feel so guilty about it all. I feel guilty for my son. I feel guilty for my friends and extended family. Mostly, I feel guilty that my husband's 20s were stolen from him as well. When he should have been out with the boys, he was nursing me back to health. When he should have been finishing out college, he was doing clinicals for a vocation and working full time while I was at the Mayo Clinic. While he should be using his vacation pay to take an actual vacation, he saves them all up for my out of town appointments.
I am constantly trying my best to make those around me know how much I appreciate them and love them. I do not feel it is enough for what they go through. I am in constant fear that one day they will all throw in the towel, and go lead the lives they want to lead. Why would anyone want to deal with fear, sadness, isolation, and boredom when they are capable of so much more than what I have to offer?
And why can these feelings of guilt and fear of losing it all not go away?! They eat at me day and night. I am so sensitive to any comment or facial expression, I can turn anything anyone does into something that is somehow my fault. I must have caused these problems. I must have made myself sick. I must have done something to cause it all. I must like the negative attention. I must be crazy and everyone just caters to my crazy.
I want to be better so that anyone who is around me, enjoys being around me. I want to be better so that I do not question my own sanity. I want to be better so that I do not question my own abilities. And most importantly, I want to be better so my son does not have to see his mom go through this and me having no idea how to handle it gracefully. I hope he learns positive lessons. I hope he does not resent me one day for all that I cannot give him. And I truly hope that those around me will decide to live the lives they want to live whether or not it includes me with all this ridiculous baggage.
For some time now, since the end of August, I have been dealing with this incredible headache and what I can only describe as strange episodes. I do have epilepsy so there is a clear history of seizures. Although, I do not tend to get an "aura" or any indication that a seizure is coming on, I can usually tell if one is imminent in the near future (possibly days or weeks). These episodes have not been seizures, in my completely unprofessional only-a-patient assessment. There are periods of confusion and disorientation. There are sometimes feelings of light headiness, dizziness, or a sensation like the earth has been ripped out from under my feet. Those are all brief, seconds to half a minute at the most. There are some flashing lights, bright lights, painful lights, sometimes along with tunnel vision. The hardest part is the headache. It is unrelenting.
In August my rheumatologist and endocrinologist suggest I talk to a neurologist (which I already have) for some other concerning issues looking more like neuropathy. When I described these most recent episodes, they suggested I get in touch with my neurologist right away and let him know. I did, thinking my seizure medication would only be increased, but instead he prescribed a dose of steroids. My neurologist is very good at making decisions without explaining them to the patient. I had no idea what the steroids were for, only that I was terrified to take them due to my diabetes.
I looked information up online using my symptoms and the steroid treatment he had given me. My research kept leading me to sights about vessel inflammation in the head or brain. The most common cause of this would be migraine but the more serious concern would be an aneurysm. That completely frightened me because I had mentioned the initial episode to my husband and explained to him it felt like something had popped or burst. I tried to push that all out of my head because it would all be too overwhelming to think about. Plus, I am in the care of professionals, so let them do their job and I will do mine.
I finished out the bout of steroid meds with little to no relief whatsoever. I waited it out a few more days. I tend to avoid taking any over the counter meds because I have so many prescribed, why add more to the mess? With no relief in sight, another episode happened. By that I mean, I had been having them throughout this period of time, but this particular episode was similar to the very first in late August. I was very disoriented. My head was throbbing, and these lights would not leave my vision no matter what I tried. I called my primary physician and she sent me to the ER.
My husband rushed home from work and took me to our local ER. There I was treated as if I had a complex partial seizure rebounded into a migraine. I was given some medication for nausea as well as a muscle relaxer. Within a few hours, I was let go as the pain let up. All I wanted was to be at home with my son.
The next morning I woke up feeling slightly better, but extremely exhausted. By about mid morning the headache had returned. This is into the third week. After a few days debating whether I should call my neurologist (he is 3 hours away), call my primary physician (I am so tired of doctors), or try to self treat I finally called my primary. Accidentally, I dialed her personal cell. That turned out to be just what needed to happen because I did get to talk to her directly, rather than through a nurse or receptionist. Initially, the week or so before when I was sent to the ER it was in hopes of getting an MRI or CT scan while one of these episodes was occurring. That never happened. I was only medicated.
My primary decided she would order the MRI she initially thought we needed, but in the meantime she prescribed a muscle relaxer to ease the pain and allow me to get through my days. I am certainly not a pill seeker and pain medication is something I cannot take.
Today, exactly one month after the initial bad episode and the start of this terrible bad dream I went in for the MRI. Unfortunately, some blood work needed to be done that had not been ordered so the MRI was done, just not the exact type my doctor wanted. Frustrating, but I am hoping they find something (small and easy). I am trying to not think too much into all of this. Compartmentalize and let the professionals handle it.
In the meantime, I am still a mom and a wife. My inlaws' side of the family had a family crisis at the same time, with an aunt being placed in ICU. It was terribly frightening and tragic, but I am glad to report she is doing well now. I can tell you she means an awful lot to myself, my husband, and my son so that wore us down pretty badly. She was so ill, I felt like I had no place to complain or even show that these episodes and doctor visits/ conversations were frightening me. I also wanted to be sure I was there 100% for those closest to her. If I could not do anything to help, the least I could do was the tedious tasks that life still throws at us all in times of crisis.
Now, as I said, our aunt is out of danger and in the stages of recovery. She is doing really well. We have fallen into a routine for school, tae kwon do, and soccer for our six year old. My husband's job seems to have stabilized his schedule a little bit more so that helps all around as well. I even said to him this morning how happy I was that things were seeming to smooth out so maybe I can get back to feeling a little more like myself soon.
The problem I am having; and, let me be honest, I have struggled with this from day one with all these health issues, is a terrible fear of abandonment. I talk a lot about feeling isolated. I feel isolated by my limitations as well as the general misunderstanding of my situation. I am not very comfortable being open with people about it. To me it sounds so out there and inconceivable, I can't imagine what others must think if I even give them a glimpse of how my body works. I know for a fact that if I heard a woman telling me this story in casual conversation at the park for example, I would think she had some serious mental issues and was seeking attention. I would blow it off, and possibly avoid her if I saw her again. That would have been me 5 years ago, before I realized real people deal with real issues all the time even if it does not show on the outside.
I know I am loved. I know I have a good support system in the small circle of friends I have along with my husband, my son, and our extended family. I know in many different situations there would be someone I could reach out to if I needed. I know when things get tough, most try to show their support even with distance between us and hectic schedules. The thing is, to me, it feels almost forced.
I, like all of them, love them so much. The people I surround myself with and keep close are there for a reason and that is because I want them around. I care for them. I think of them often. They make me a better person some how, and that makes me appreciate them. I assume the feelings are mutual. If not identical, there are equally good reasons they have love in their hearts for me. For that, I am grateful.
Everyday that I wake up and face another day, I think of how nice it would be to not have to worry about the things I worry about on a daily basis. We all have worries, but I remember the worries I had before these illnesses and the drastic change my life has taken. If it were up to me, I would not change a thing because I have learned so much from this all. I believe it has definitely made me more open, understanding, compassionate, and appreciative. But, if it were up to me, I would walk away.
I would walk away from all the health struggles. I would walk away from all the limitations it has placed on my life as well as my family's life. I would walk away from the sacrifices I have had to make to accommodate theses illnesses. So, in my head, I do not see why anyone else would not want to do the same thing.
My 20s were stolen from me by diseases that were out of my control. I did not get to turn 21 and go out for a celebratory drink. I do not get to go to a nice restaurant for a date. I don't even get to go to a restaurant for a random 20s birthday. I do not get to go to bars or clubs. (None of which I was interested in before, but I'd like the choice for myself)
My son is now six and starting sports and making friends. He does not like to leave me very much because he worries about me. He will only stay with one grandma over night, no one else.....and she lives 3/4 mile down the street. He is in tae kwon do, but the tournaments are 3 hours away. I have trouble traveling and without a job, we do not have the income to go to these tournaments.
My husband is only 30. It is football season. I love football, most sports really. I love to watch sports with my husband. But, he is 30. Every now and then he wants to go to a sports bar and watch the games or have a friend over to watch the games. He forfeits nights out with his friends to spend nights in with me, even though I am usually asleep by the time our six year old is in bed. He withholds invitations for his friends to come to our house to watch the games because he knows it will be too much on me.
These illnesses have taken so much away from us. They have taught us to be better parents and better spouses. They have taught us to be better people. We listen to one another and think of one another more so than most young couples. We communicate on a level even older generations have not mastered. We have our own share of problems, but we have so many good things. I just feel like these illnesses are taking too much away from everyone around me!
I want my son to have a typical childhood and enjoy more time with his friends doing kid things. I want my husband to not worry about me and our finances so much. I want him to be able to spend Monday Night Football out with his best friend for a drink and some unnecessary vulgar talk amongst men. I want my mother in law not to have to call every single day when I am alone to make sure everything is OK so she can go about her day. I want my friends to not worry about bothering me when I am tired, or avoiding inviting me some place because they know I will not go. I want all of these things. That is not my life though.
This is my life. I am happy in it. I am learning to accept these difficult things. I am OK with missing out on so much. I would prefer to spend every waking moment with my son or my husband. I would love nothing more than for them to be infinitely happy and just know how much I love them. But I need rest. Any moment I have that is not obligated to a mommy duty or a wifely duty, I want to read a book in bed, or watch trashy television, or sleep. I do everything I physically can in a day, and beyond that, I just want rest. Sometimes even talking exhausts me.
I do not feel that anyone around me really enjoys any of that. I appreciate them giving up their time and energy to be with me. I appreciate all the sacrifices they all make. I appreciate, especially, the things they do to show me they are thinking of me even when I am not around. I appreciate the fact that they are all still here, even through these tough years. I just do not believe that they want to be. I believe they want to live the lives they are capable of living. And that makes me feel AWFUL.
I feel so guilty about it all. I feel guilty for my son. I feel guilty for my friends and extended family. Mostly, I feel guilty that my husband's 20s were stolen from him as well. When he should have been out with the boys, he was nursing me back to health. When he should have been finishing out college, he was doing clinicals for a vocation and working full time while I was at the Mayo Clinic. While he should be using his vacation pay to take an actual vacation, he saves them all up for my out of town appointments.
I am constantly trying my best to make those around me know how much I appreciate them and love them. I do not feel it is enough for what they go through. I am in constant fear that one day they will all throw in the towel, and go lead the lives they want to lead. Why would anyone want to deal with fear, sadness, isolation, and boredom when they are capable of so much more than what I have to offer?
And why can these feelings of guilt and fear of losing it all not go away?! They eat at me day and night. I am so sensitive to any comment or facial expression, I can turn anything anyone does into something that is somehow my fault. I must have caused these problems. I must have made myself sick. I must have done something to cause it all. I must like the negative attention. I must be crazy and everyone just caters to my crazy.
I want to be better so that anyone who is around me, enjoys being around me. I want to be better so that I do not question my own sanity. I want to be better so that I do not question my own abilities. And most importantly, I want to be better so my son does not have to see his mom go through this and me having no idea how to handle it gracefully. I hope he learns positive lessons. I hope he does not resent me one day for all that I cannot give him. And I truly hope that those around me will decide to live the lives they want to live whether or not it includes me with all this ridiculous baggage.
Thursday, August 30, 2012
Full Circle
I'm starting to believe that life, in itself, is inevitably a whirlwind. Every time I think things might be leveling out and I can actually relax, something always comes up. I am learning, due to listening (wink, wink imagine what can happen when you pay attention), that my life is not that unusual. The details are different, the whirlwind is the same.
I haven't been feeling up to par lately. I ignored it and kept pushing on because it is the end of summer and school is starting. It is a stressful, crazy, busy time for all of us, not just parents. I assumed that once the routine was in place and things in the environment calmed down, my body would rest and I would recoup. Unfortunately, that hasn't happened.
Last Thursday I had an unusual episode. I have not had a grand mal seizure since June 2010. I don't remember the last petit mal or partial complex seizure I have had. I was so used to having them daily, then they slowed and were more sporadic until it got to the point that I didn't even note them. Thursday I was feeling very tired and just not well. There was a bright light, then shooting pain into my eyes that radiated into my head. A confusion spell followed that lasted a minute or so. I never lost consciousness. When I was able to focus again, it was like I was looking through a tunnel. My peripheral vision was still filled with that bright light and it was incredibly painful to move my eyes. The headache only worsened and never subsided.
That day I had already obligated myself to volunteer at my son's school. I went ahead and went about my day in pain and exhausted the entire time. My ultimate thought is always that all I need is a good night's rest and tomorrow will be better. That got me through the day. A week later I am still in pain.
The following Monday, my husband and I were scheduled to travel to see two of my specialists, the endocrinologist (establishing with a new one yet again due to doctors leaving our small town) and the rheumatologist. Five o'clock that morning we get a call from my mother in law. My husband's aunt, who happens to have Downs Syndrome and Rheumatoid Arthritis, was being rushed to the emergency room. She had also not been feeling well since Thursday. We thought we got a bug together. She was not able to breath. She was admitted with pneumonia within 2 hours. We could not reschedule or cancel my appointments on such short notice, but we were worried.
We got our son ready for school, followed his morning routine, packed and headed straight to the hospital. His aunt is in her late 40s. This is a huge accomplishment for someone with her history. Most recently she had a bone marrow biopsy due to fear of leukemia (that came back normal). So, you could imagine, it is frightening to see her in the hospital. We tied up loose ends and headed up to see my doctors.
I was super nervous about establishing with my new endo. I was diagnosed (with the Type I Diabetes) by this wonderful doctor who left the hospital I was established at months after. I was then with another great endo for the last 7 years. He left that hospital system as well. I established with a local endo, but he left the practice he had only a year after. I wanted to follow him where ever he transferred, but at the time he left he had no clear idea of where he was going. My rheumatologist actually referred me to my new endo and when I heard his name I almost dropped. It was the original doctor who had diagnosed me. I was stoked because I knew he was good, I knew he knew me, and I knew his style.
Still, I get nervous to walk into a new doctor of any specialty and lay out my history. Will they believe me or look at me like a hypochondriac? Will they agree with the treatment the other doctors have already established? Will he change something I am not comfortable with or find something I didn't know about? It's like a blind date from hell.
As we were registering for that endo appointment early Tuesday morning, with our aunt on our minds, we see the endo I had locally walk by. He got a job at the facility where I had been referred. Ironic and awesome. He knows my case. Now, I know where he is if I am not comfortable with this new doctor or if the doctor has questions, they can exchange notes. So, not only was it a full circle moment to be back with the endo I had first met and meant so much to me, but I knew someone who dealt with my current situation was there as well. I felt like I was in a nice little safety net.
Now, to get to the nitty gritty I'd like to forget. I had many concerns that have been haunting me for years. I occasionally bring them up to different specialists, but they always get pushed under the rug, ignored, or overlooked with more serious concerns. At this point, these things are progressing and becoming more of a problem in my daily life. Since the beginning of my diabetes I have dealt with intermittent numbness, tingling, and burning pain in my extremities. For a while it was talked away as "feeling the symptoms of higher blood sugars", then it was thought to be caused by the malabsorption and we were told it would resolve. At this point, there is definitely no clear connection to blood sugars as my A1C is 6.1% (which is AWESOME). I reported this to the new/old endo.
He agreed it was not connected to "symptoms of highs". He was, of course, concerned about my nutrition due to the malabsorption and bucket of digestive problems. He wanted to test all of those, but asked about my neurology treatment. I have seizures and am followed by an neurologist, but I have never met a neurologist that pays attention to anything but the seizures. Another concern of the endo was this episode that happened the previous Thursday, now 3 days back, and the pain had not subsided.....in fact it was getting worse. He recommendation was to test the nutrients along with many other things through blood tests, but he also wanted me to contact my neurologist. The endo wanted the episode to be tended to as well as an EMG (electromyography) along with a nerve conduction study. These tests determine if and where there is possible nerve damage. Another thought was that a past grand mal seizure could have caused whiplash (which has happened with a few seizures) and a disc may be out of place. Any way you look at it, he wanted the neurologist to look at the WHOLE picture not just the seizures. He actually is researching to find a neurologist we think can handle the totality of my situation.
Then, we move onto rheumatology. He thoughts we right in line with my endo. That in itself is like heaven. Rarely do doctors agree. I never discuss doctors opinions among doctors to protect egos. I take in all the info from everyone I see, use what I think is useful, and toss what I am not comfortable with. For two doctors to have almost identical ideas, thoughts, and recommendations is remarkable. Both doctors are worried about adrenal insufficiency (Addison's disease) and malabsorption. Blood tests were done, and I am glad to report no new findings at this time. Also notable is that my diabetes as well as lupus are as stable as we can get right now. Talk about a slam dunk!
Throughout all of this, we were corresponding with relatives down home. There was a concern that our aunt had congestive heart failure and she seemed to be getting worse not better. We left those appointments emotional wrecks. Glad to have attentive doctors who are going to be so thorough. Glad to have some bulldogs on my case to help me. Them along with my primary and my immunologist are really taking this bull by the horns. But....always a but......there are these serious concerns. And our aunt is declining.
On our way home I contacted my current neurologist to report my "episode". I won't even bother you with the mess it was to report it and get it handled and treated. Let's just say that was w whole other level of unnecessary stress. The neurologist put me on a round a steroids. The explanation I was given was it was most likely a petit mal seizure that rebounded with a migraine. Inflammation in the vessels of the brain needed to be reduced, and therefore the steroids are necessary. Another ironic occurrence because my endo had just warned me that continued steroid treatments may speed up the adrenal insufficiency. He stressed to us that steroid treatments be used minimally to treat inflammation and contact him to notify him if I am in need of steroid treatment. So, a few short hours after walking out of his office, I was calling to report steroid use. For those of you who do not know, steroids raise blood sugars and it can be very serious in diabetics. My comorbidities lead to a very meticulous juggle act. All of this was dealt with on the road on our way home.
We got home Tuesday evening and rushed to see our aunt. I am happy to report there was no congestive heart failure detected, but unfortunately the pneumonia is not clearing. There is talk today about transferring her into ICU. That side of the family just lost an uncle a few short years ago. This is a big scare. This aunt is the baby of the family. She is also the heart and the smile of us all, such an inspiration and light in our lives. We will leave this in God's hands. She deserves His best.
We are back around to Thursday again. I am on my second day of my steroid treatment. I am advised to be extremely careful with activity and exposure because in my current state I am easily susceptible to infection or complications. How do I do that at a time like this?! I volunteered again today at my son's school. This will be a weekly thing. I am staying away from the hospital room, but trying my best to help out the family members who are there by dealing with the small things that need to be dealt with outside of the hospital. I am trying to keep their stress levels as low as possible so that our aunt can get the attention she needs and so that everyone can be as healthy as possible to get her through this tough time.
At the school, I was talking with the cafeteria woman and she talked about her family. Apparently, she had a scare with a nephew yesterday. She was tired and stressed from dealing with that. As she vented about it, we got into the history of our families. After talking to a couple close friends yesterday, a few family members, as well as this woman.......it just started to really sink in.....we all have tragedies. We all have scares. We all have fears. We all have too many responsibilities. None of us have enough time to get done what we want to get done. Another one of those, "I wish the world would stop turning long enough for me to catch up....." kinda things.
Usually, with all this going on around me, especially with how I currently feel physically, I would be in a terrible depression. Self pity would have taken over. That would only perpetuate my bad physical state. Maybe it is God's hands carrying me. Maybe it is a coping mechanism. I really don't know. I have this strange sense of calm. I am scared about my unknowns. I am scared and saddened for our aunt's current state. But I am waking up everyday and going about my business. All I can do right now is do what I NEED to do. I will do my best. I will let the professionals handle the worries of the health for both myself and our aunt. I will work through my obligations and responsibilities one by one. It will get done in due time.
Then, I see Robin Roberts farewell for her leave from Good Morning America. I have an uncle in the hospital right now going through a very similar health issue. We have been watching him go through it for several years now. His immediate family has been through so much. And watching the GMA family and Robin Roberts family was so heart breaking and heartwarming in the same breath. I just breathe in and breathe out. I thank God for the gifts we have around us. I don't feel angry or sad about our struggles. I realize everyone has struggle and turmoil in their life. It may not always be in the form of health issues, but the struggles are there nonetheless.
I see God's work everyday in my son's eyes. His innocence, his joy, his curiosity, his life. I see God's work in our aunt who has beat so much and is still fighting with a smile on her face and the gall to still flirt with the respiratory therapist she thinks is a cutie (she is boy crazy). I see the beautiful sky. I hear the songs of the birds. I feel the love from my friends and my family. I get reminders of the dad I lost and love daily.
My life is good. I am so rich with love, faith, and joy.
I haven't been feeling up to par lately. I ignored it and kept pushing on because it is the end of summer and school is starting. It is a stressful, crazy, busy time for all of us, not just parents. I assumed that once the routine was in place and things in the environment calmed down, my body would rest and I would recoup. Unfortunately, that hasn't happened.
Last Thursday I had an unusual episode. I have not had a grand mal seizure since June 2010. I don't remember the last petit mal or partial complex seizure I have had. I was so used to having them daily, then they slowed and were more sporadic until it got to the point that I didn't even note them. Thursday I was feeling very tired and just not well. There was a bright light, then shooting pain into my eyes that radiated into my head. A confusion spell followed that lasted a minute or so. I never lost consciousness. When I was able to focus again, it was like I was looking through a tunnel. My peripheral vision was still filled with that bright light and it was incredibly painful to move my eyes. The headache only worsened and never subsided.
That day I had already obligated myself to volunteer at my son's school. I went ahead and went about my day in pain and exhausted the entire time. My ultimate thought is always that all I need is a good night's rest and tomorrow will be better. That got me through the day. A week later I am still in pain.
The following Monday, my husband and I were scheduled to travel to see two of my specialists, the endocrinologist (establishing with a new one yet again due to doctors leaving our small town) and the rheumatologist. Five o'clock that morning we get a call from my mother in law. My husband's aunt, who happens to have Downs Syndrome and Rheumatoid Arthritis, was being rushed to the emergency room. She had also not been feeling well since Thursday. We thought we got a bug together. She was not able to breath. She was admitted with pneumonia within 2 hours. We could not reschedule or cancel my appointments on such short notice, but we were worried.
We got our son ready for school, followed his morning routine, packed and headed straight to the hospital. His aunt is in her late 40s. This is a huge accomplishment for someone with her history. Most recently she had a bone marrow biopsy due to fear of leukemia (that came back normal). So, you could imagine, it is frightening to see her in the hospital. We tied up loose ends and headed up to see my doctors.
I was super nervous about establishing with my new endo. I was diagnosed (with the Type I Diabetes) by this wonderful doctor who left the hospital I was established at months after. I was then with another great endo for the last 7 years. He left that hospital system as well. I established with a local endo, but he left the practice he had only a year after. I wanted to follow him where ever he transferred, but at the time he left he had no clear idea of where he was going. My rheumatologist actually referred me to my new endo and when I heard his name I almost dropped. It was the original doctor who had diagnosed me. I was stoked because I knew he was good, I knew he knew me, and I knew his style.
Still, I get nervous to walk into a new doctor of any specialty and lay out my history. Will they believe me or look at me like a hypochondriac? Will they agree with the treatment the other doctors have already established? Will he change something I am not comfortable with or find something I didn't know about? It's like a blind date from hell.
As we were registering for that endo appointment early Tuesday morning, with our aunt on our minds, we see the endo I had locally walk by. He got a job at the facility where I had been referred. Ironic and awesome. He knows my case. Now, I know where he is if I am not comfortable with this new doctor or if the doctor has questions, they can exchange notes. So, not only was it a full circle moment to be back with the endo I had first met and meant so much to me, but I knew someone who dealt with my current situation was there as well. I felt like I was in a nice little safety net.
Now, to get to the nitty gritty I'd like to forget. I had many concerns that have been haunting me for years. I occasionally bring them up to different specialists, but they always get pushed under the rug, ignored, or overlooked with more serious concerns. At this point, these things are progressing and becoming more of a problem in my daily life. Since the beginning of my diabetes I have dealt with intermittent numbness, tingling, and burning pain in my extremities. For a while it was talked away as "feeling the symptoms of higher blood sugars", then it was thought to be caused by the malabsorption and we were told it would resolve. At this point, there is definitely no clear connection to blood sugars as my A1C is 6.1% (which is AWESOME). I reported this to the new/old endo.
He agreed it was not connected to "symptoms of highs". He was, of course, concerned about my nutrition due to the malabsorption and bucket of digestive problems. He wanted to test all of those, but asked about my neurology treatment. I have seizures and am followed by an neurologist, but I have never met a neurologist that pays attention to anything but the seizures. Another concern of the endo was this episode that happened the previous Thursday, now 3 days back, and the pain had not subsided.....in fact it was getting worse. He recommendation was to test the nutrients along with many other things through blood tests, but he also wanted me to contact my neurologist. The endo wanted the episode to be tended to as well as an EMG (electromyography) along with a nerve conduction study. These tests determine if and where there is possible nerve damage. Another thought was that a past grand mal seizure could have caused whiplash (which has happened with a few seizures) and a disc may be out of place. Any way you look at it, he wanted the neurologist to look at the WHOLE picture not just the seizures. He actually is researching to find a neurologist we think can handle the totality of my situation.
Then, we move onto rheumatology. He thoughts we right in line with my endo. That in itself is like heaven. Rarely do doctors agree. I never discuss doctors opinions among doctors to protect egos. I take in all the info from everyone I see, use what I think is useful, and toss what I am not comfortable with. For two doctors to have almost identical ideas, thoughts, and recommendations is remarkable. Both doctors are worried about adrenal insufficiency (Addison's disease) and malabsorption. Blood tests were done, and I am glad to report no new findings at this time. Also notable is that my diabetes as well as lupus are as stable as we can get right now. Talk about a slam dunk!
Throughout all of this, we were corresponding with relatives down home. There was a concern that our aunt had congestive heart failure and she seemed to be getting worse not better. We left those appointments emotional wrecks. Glad to have attentive doctors who are going to be so thorough. Glad to have some bulldogs on my case to help me. Them along with my primary and my immunologist are really taking this bull by the horns. But....always a but......there are these serious concerns. And our aunt is declining.
On our way home I contacted my current neurologist to report my "episode". I won't even bother you with the mess it was to report it and get it handled and treated. Let's just say that was w whole other level of unnecessary stress. The neurologist put me on a round a steroids. The explanation I was given was it was most likely a petit mal seizure that rebounded with a migraine. Inflammation in the vessels of the brain needed to be reduced, and therefore the steroids are necessary. Another ironic occurrence because my endo had just warned me that continued steroid treatments may speed up the adrenal insufficiency. He stressed to us that steroid treatments be used minimally to treat inflammation and contact him to notify him if I am in need of steroid treatment. So, a few short hours after walking out of his office, I was calling to report steroid use. For those of you who do not know, steroids raise blood sugars and it can be very serious in diabetics. My comorbidities lead to a very meticulous juggle act. All of this was dealt with on the road on our way home.
We got home Tuesday evening and rushed to see our aunt. I am happy to report there was no congestive heart failure detected, but unfortunately the pneumonia is not clearing. There is talk today about transferring her into ICU. That side of the family just lost an uncle a few short years ago. This is a big scare. This aunt is the baby of the family. She is also the heart and the smile of us all, such an inspiration and light in our lives. We will leave this in God's hands. She deserves His best.
We are back around to Thursday again. I am on my second day of my steroid treatment. I am advised to be extremely careful with activity and exposure because in my current state I am easily susceptible to infection or complications. How do I do that at a time like this?! I volunteered again today at my son's school. This will be a weekly thing. I am staying away from the hospital room, but trying my best to help out the family members who are there by dealing with the small things that need to be dealt with outside of the hospital. I am trying to keep their stress levels as low as possible so that our aunt can get the attention she needs and so that everyone can be as healthy as possible to get her through this tough time.
At the school, I was talking with the cafeteria woman and she talked about her family. Apparently, she had a scare with a nephew yesterday. She was tired and stressed from dealing with that. As she vented about it, we got into the history of our families. After talking to a couple close friends yesterday, a few family members, as well as this woman.......it just started to really sink in.....we all have tragedies. We all have scares. We all have fears. We all have too many responsibilities. None of us have enough time to get done what we want to get done. Another one of those, "I wish the world would stop turning long enough for me to catch up....." kinda things.
Usually, with all this going on around me, especially with how I currently feel physically, I would be in a terrible depression. Self pity would have taken over. That would only perpetuate my bad physical state. Maybe it is God's hands carrying me. Maybe it is a coping mechanism. I really don't know. I have this strange sense of calm. I am scared about my unknowns. I am scared and saddened for our aunt's current state. But I am waking up everyday and going about my business. All I can do right now is do what I NEED to do. I will do my best. I will let the professionals handle the worries of the health for both myself and our aunt. I will work through my obligations and responsibilities one by one. It will get done in due time.
Then, I see Robin Roberts farewell for her leave from Good Morning America. I have an uncle in the hospital right now going through a very similar health issue. We have been watching him go through it for several years now. His immediate family has been through so much. And watching the GMA family and Robin Roberts family was so heart breaking and heartwarming in the same breath. I just breathe in and breathe out. I thank God for the gifts we have around us. I don't feel angry or sad about our struggles. I realize everyone has struggle and turmoil in their life. It may not always be in the form of health issues, but the struggles are there nonetheless.
I see God's work everyday in my son's eyes. His innocence, his joy, his curiosity, his life. I see God's work in our aunt who has beat so much and is still fighting with a smile on her face and the gall to still flirt with the respiratory therapist she thinks is a cutie (she is boy crazy). I see the beautiful sky. I hear the songs of the birds. I feel the love from my friends and my family. I get reminders of the dad I lost and love daily.
My life is good. I am so rich with love, faith, and joy.
Subscribe to:
Posts (Atom)