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Amy Keys

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  1. by Amy Keys Chronic illness comes with a smorgasbord of difficulties, but one sure to be at the center of the struggle buffet is GUILT. Guilt manifests in many forms and can quietly sneak in a bit at a time or viciously attack all at once. It's silly to think that a person could feel guilt over something that certainly wasn't their doing or their fault, but yet it is incredibly common. Understanding the different types of guilt experienced can be helpful for the patient, and more importantly, for the family and friends of that person as well. The most obvious type of guilt comes with the financial burden. “My medical procedures and medications are costing this family so much money.” “Maybe we would have a saving account if it weren’t for the emergency room visits.” “I could be making money if I weren’t sick." It's one thing to be too sick to work, but how discouraging to not only be unable to make money but also spend money on health expenses nonstop. Beyond finances, frequently the one who suffers from a chronic condition feels like a physical burden to family and friends. From needing a lift assist to helping with simple hygiene needs, the physical toll can be exhausting to those acting as caretakers. It can be hard to think that your health is draining the energy of your family. The guilt that comes with canceling plans at the last minute or even failing to commit to begin with can be quite upsetting as well. Once again, becoming ill or flaring is not something within a chronically ill person's control. It's so hard to imagine people thinking of you as an irresponsible person because you can't always be counted on for an event. This perception is even more likely with so-called 'invisible illnesses' - nothing like looking great but feeling too fatigued to even leave bed. It can be debilitating to wonder and worry about what people are saying about you behind your back. What if they truly think you're just a flake? What if you have to call in sick to work? Now the person with the condition feels like they are burdening not only their family but their coworkers too. Several people deal with guilt over having specific food restrictions and needs. It can be hard to be the 'high maintenance' one of the group who can only eat at particular establishments, or can only cook certain foods. The types of guilt experienced can seem daunting and unending. So, what can be done? I find it helpful to think about the facts of the matter and only what is within my control. Can I suddenly make myself able to work? Can I decide not to have medical expenses? Can I make myself well enough to be sure I can make it to that event? No. It's ok to feel frustrated for a moment, but don't allow yourself to spend too much time on something that you have no control over. It's important to stop, take a deep breath, and empower yourself by shifting your focus and guiding your thinking in more positive directions. First of all, remember that your health is the top priority, both physical and emotional. Try a gratitude journal to keep your mindset on the positive, instead of frustrations and negatives. Remember to take time for self-care as well; whichever type is best for you. Focus on the fact that if it were your family member who was struggling with illness, you wouldn't feel burdened. You would take it in stride and not resent them for the changes to both your lives. Perhaps when a loved one tells you that you aren't a burden, give them the same benefit of the doubt and know that they mean it. Realize that you still have value and purpose; it may be different than it was, but you still have a place in the lives of your family and friends. You can still encourage the people around you and help in other ways. This is not the end of your story.
  2. My intention with this article is to inspire you to be able to find ways to do things you once loved or enjoyed. My counselor recently told me that I need to make a list of new expectations for my new reality. That’s just it. All of us with chronic illness have a new reality that we certainly didn’t ask for. My husband loves a challenge. When I really want to do something we brainstorm together and find workarounds. I loved when we would go to the Oregon coast and walk the beach looking for glass floats. If you aren’t familiar, local artists in Lincoln City make blown glass orbs in all different colors and designs, then the city has local volunteers hide them along the beach. Each one is engraved with a number and can be looked up to find which artist made it and on what day. They hide approximately 3,000 each year. We never found one and I was really bummed that we probably couldn’t go back and do it again. My husband reminded me that in fact, we could, we just needed to find a hotel with accessible beach access (not 65 stairs straight down) and we can rent a wheelchair with tracks, making the sand available to me again. Brilliant. I’ve always liked traveling. Gone are the days of working all day, then leaving work in a rush to drive through the night to enjoy a quick weekend getaway, only to rush home in time for a quick nap before heading back to work. My body can’t even get through a workday anymore, much less cram in a quick getaway on the fly. It doesn’t mean that we can’t still do little trips to escape, but we have to make adjustments. We have to have an extra day after we arrive for me to spend all day resting in the hotel bed. Is it more expensive? Yes. Is it a bit more inconvenient? Yep. But we can make it work and still enjoy little trips as long as we plan ample rest before and especially after the journey there. Driving really long distances straight through is out, but we can find a fun little town half-way and grab a hotel there to break the drive into two days, instead of one. Sometimes it’s fun to stay in a teeny tiny town on the way to the tourist destination anyway. The other option is that instead of driving nine hours in a day, as we used to, we could instead fly over to be much closer to our final destination. Then we would only need to rent a car and drive a couple of hours to get to our final stop. Again, just another option that can be considered, even though it’s not what we used to do. My sister-in-law always wanted us to go to Scotland with her. Once this became my new reality I was bummed to realize I couldn’t make that flight over the ocean at such high altitudes. My husband found some different options to get there by boat though. Yes, it is more expensive than flying. Yes, it takes longer meaning my husband would need to use more vacation time. But I can’t tell you how nice it is just to know that it is possible, even though we certainly aren’t planning it anytime soon. Just knowing that it could be done and we don’t have to completely eliminate the possibility of ever doing it means so much to me. Now, maybe you aren’t at a place yet to even consider travel. Here are some of my best workarounds for around the house and day-to-day life. In our bedroom we have a remote to turn on the fan and the overhead light, eliminating the need to get up and walk to the switch. If I want to be well enough to do a certain activity, I have to pre-plan my rest. I write my rest days on my calendar to make sure I don’t accidentally schedule an appointment. I load up on electrolytes and avoid foods that tend to make my belly angry for days before the event to make sure I’m at my healthiest. On a regular day, I still plan rest times between each activity, such as a shower, doing my hair, makeup, etc. Speaking of showering, I keep a wireless doorbell in my shower and only shower when someone else is home. I can hit my doorbell and get help right away if I feel faint or fall. Another workaround is to take my pills when I wake up early to go to the bathroom, then when I get up for the day a few hours later my pills are already in effect. I take double water to my bedroom- one insulated and one not. I drink the non-insulated one first then the other is still cold when I get to that. Doing that cuts my trips to the kitchen in half. I keep a candle on my nightstand to help when odors upset me. I also have my pulse oximeter and blood pressure cuff on my nightstand so I can keep records for my doctors. It’s important to have entertainment items near all of my rest places- some examples are my cross stitch, a book, coloring book, Ipad, etc. That way I never feel trapped without something fun to steal my focus. On better days I pre-cook freezer meals to throw in the oven on bad days. I can’t lift up the dog water bowl multiple time a day to refill it, so I keep it in the floor in front of the sink and pull the sprayer out to fill the bowl throughout the day. I know I’m not the only one who is frustrated by not being able to do things that I used to be able to do. We just need to spin the perspective a bit. It’s not so much that we can’t do things we used to do, it’s just that we maybe can’t do it in the same way we previously did. But there is almost always a workaround to be found. Return to 02/2019 Table of Contents
  3. My intention with this article is to inspire you to be able to find ways to do things you once loved or enjoyed. My counselor recently told me that I need to make a list of new expectations for my new reality. That’s just it. All of us with chronic illness have a new reality that we certainly didn’t ask for. My husband loves a challenge. When I really want to do something we brainstorm together and find workarounds. I loved when we would go to the Oregon coast and walk the beach looking for glass floats. If you aren’t familiar, local artists in Lincoln City make blown glass orbs in all different colors and designs, then the city has local volunteers hide them along the beach. Each one is engraved with a number and can be looked up to find which artist made it and on what day. They hide approximately 3,000 each year. We never found one and I was really bummed that we probably couldn’t go back and do it again. My husband reminded me that in fact, we could, we just needed to find a hotel with accessible beach access (not 65 stairs straight down) and we can rent a wheelchair with tracks, making the sand available to me again. Brilliant. I’ve always liked traveling. Gone are the days of working all day, then leaving work in a rush to drive through the night to enjoy a quick weekend getaway, only to rush home in time for a quick nap before heading back to work. My body can’t even get through a workday anymore, much less cram in a quick getaway on the fly. It doesn’t mean that we can’t still do little trips to escape, but we have to make adjustments. We have to have an extra day after we arrive for me to spend all day resting in the hotel bed. Is it more expensive? Yes. Is it a bit more inconvenient? Yep. But we can make it work and still enjoy little trips as long as we plan ample rest before and especially after the journey there. Driving really long distances straight through is out, but we can find a fun little town half-way and grab a hotel there to break the drive into two days, instead of one. Sometimes it’s fun to stay in a teeny tiny town on the way to the tourist destination anyway. The other option is that instead of driving nine hours in a day, as we used to, we could instead fly over to be much closer to our final destination. Then we would only need to rent a car and drive a couple of hours to get to our final stop. Again, just another option that can be considered, even though it’s not what we used to do. My sister-in-law always wanted us to go to Scotland with her. Once this became my new reality I was bummed to realize I couldn’t make that flight over the ocean at such high altitudes. My husband found some different options to get there by boat though. Yes, it is more expensive than flying. Yes, it takes longer meaning my husband would need to use more vacation time. But I can’t tell you how nice it is just to know that it is possible, even though we certainly aren’t planning it anytime soon. Just knowing that it could be done and we don’t have to completely eliminate the possibility of ever doing it means so much to me. Now, maybe you aren’t at a place yet to even consider travel. Here are some of my best workarounds for around the house and day-to-day life. In our bedroom we have a remote to turn on the fan and the overhead light, eliminating the need to get up and walk to the switch. If I want to be well enough to do a certain activity, I have to pre-plan my rest. I write my rest days on my calendar to make sure I don’t accidentally schedule an appointment. I load up on electrolytes and avoid foods that tend to make my belly angry for days before the event to make sure I’m at my healthiest. On a regular day, I still plan rest times between each activity, such as a shower, doing my hair, makeup, etc. Speaking of showering, I keep a wireless doorbell in my shower and only shower when someone else is home. I can hit my doorbell and get help right away if I feel faint or fall. Another workaround is to take my pills when I wake up early to go to the bathroom, then when I get up for the day a few hours later my pills are already in effect. I take double water to my bedroom- one insulated and one not. I drink the non-insulated one first then the other is still cold when I get to that. Doing that cuts my trips to the kitchen in half. I keep a candle on my nightstand to help when odors upset me. I also have my pulse oximeter and blood pressure cuff on my nightstand so I can keep records for my doctors. It’s important to have entertainment items near all of my rest places- some examples are my cross stitch, a book, coloring book, Ipad, etc. That way I never feel trapped without something fun to steal my focus. On better days I pre-cook freezer meals to throw in the oven on bad days. I can’t lift up the dog water bowl multiple time a day to refill it, so I keep it in the floor in front of the sink and pull the sprayer out to fill the bowl throughout the day. I know I’m not the only one who is frustrated by not being able to do things that I used to be able to do. We just need to spin the perspective a bit. It’s not so much that we can’t do things we used to do, it’s just that we maybe can’t do it in the same way we previously did. But there is almost always a workaround to be found. Return to 02/2019 Table of Contents
  4. Amy Keys

    Beat the heat

    If you have dysautonomia, you already know that your autonomic nervous system is faulty. And of all the systems controlled by our autonomic nervous system, regulating body temperature can be the "big" one during the summer. Due to poorer temperature regulation, many of us might experience major health issues this time of year - noted by excessive sweating or the inability to sweat. Heat intolerance in particular, is a big problem throughout the summer. Fatigue is increased, as well as the possibility of dehydration. Along with those two symptoms, is the near guarantee that others will be increased and/or aggravated such as dizziness, nausea, light-headedness, tachycardia, and weakness. While there is no cure for the dysfunction of the autonomic nervous system, there are certainly steps that can be taken to help fight the heat. Avoiding direct sunlight is very important, as well as staying as cool as possible. Cooling vests , neck ties and cooling towels can be bought, as well as wick-away clothing that helps to keep the body cool. I have found that a wet towel thrown in the freezer for a little bit can be very refreshing. Even better, I get a towel wet and drop a few drops of peppermint extract on it and then cool it in the freezer. I don’t leave the house without my mini spritzing fan. It has saved my life several times and was certainly worth the three-dollar investment. Ice packs are also an option. They can be used inside the collar of clothing or in the groin area if severely overheated. Although, when using ice, care needs to be taken to avoid the packs coming in direct contact with the skin. It is imperative to avoid standing while in the heat. Finally, staying hydrated is of the utmost importance. Sweating excessively can lead to a large amount of salt loss which can be life threatening. But even just a small amount of salt lost through sweating can cause symptoms to flare if not hydrated properly. Therefore, it is necessary to replenish electrolytes when out in the heat. While Gatorade and Powerade can sometimes be the quickest and easiest ways to do so, many people may be concerned by the amount of sugar and artificial dye and flavors in these sports drinks. If you are concerned about commercial beverages, there are many homemade electrolyte drink recipes available online, as well as products that use less sugar and dye. Some of the more popular are Normalyte, Banana Bags, and my personal favorite Nuun electrolyte tablets which can be dropped into a bottle of water. Nuun tablets are also gluten free, vegan, non-GMO sourced, and soy and dairy free which makes them an excellent choice for those who have allergies as well. The product choice is yours, but be sure you don’t skip out on replenishing your electrolytes while out in the heat. Your body will thank you! Don’t let summertime get you down and sick. Do your best to get out and enjoy the weather, but be prepared to cool down and hydrate up!
  5. Amy Keys

    Beat the heat

    If you have dysautonomia, you already know that your autonomic nervous system is faulty. And of all the systems controlled by our autonomic nervous system, regulating body temperature can be the "big" one during the summer. Due to poorer temperature regulation, many of us might experience major health issues this time of year - noted by excessive sweating or the inability to sweat. Heat intolerance in particular, is a big problem throughout the summer. Fatigue is increased, as well as the possibility of dehydration. Along with those two symptoms, is the near guarantee that others will be increased and/or aggravated such as dizziness, nausea, light-headedness, tachycardia, and weakness. While there is no cure for the dysfunction of the autonomic nervous system, there are certainly steps that can be taken to help fight the heat. Avoiding direct sunlight is very important, as well as staying as cool as possible. Cooling vests , neck ties and cooling towels can be bought, as well as wick-away clothing that helps to keep the body cool. I have found that a wet towel thrown in the freezer for a little bit can be very refreshing. Even better, I get a towel wet and drop a few drops of peppermint extract on it and then cool it in the freezer. I don’t leave the house without my mini spritzing fan. It has saved my life several times and was certainly worth the three-dollar investment. Ice packs are also an option. They can be used inside the collar of clothing or in the groin area if severely overheated. Although, when using ice, care needs to be taken to avoid the packs coming in direct contact with the skin. It is imperative to avoid standing while in the heat. Finally, staying hydrated is of the utmost importance. Sweating excessively can lead to a large amount of salt loss which can be life threatening. But even just a small amount of salt lost through sweating can cause symptoms to flare if not hydrated properly. Therefore, it is necessary to replenish electrolytes when out in the heat. While Gatorade and Powerade can sometimes be the quickest and easiest ways to do so, many people may be concerned by the amount of sugar and artificial dye and flavors in these sports drinks. If you are concerned about commercial beverages, there are many homemade electrolyte drink recipes available online, as well as products that use less sugar and dye. Some of the more popular are Normalyte, Banana Bags, and my personal favorite Nuun electrolyte tablets which can be dropped into a bottle of water. Nuun tablets are also gluten free, vegan, non-GMO sourced, and soy and dairy free which makes them an excellent choice for those who have allergies as well. The product choice is yours, but be sure you don’t skip out on replenishing your electrolytes while out in the heat. Your body will thank you! Don’t let summertime get you down and sick. Do your best to get out and enjoy the weather, but be prepared to cool down and hydrate up!
  6. Some people honestly don’t remember a time when they were symptom free and healthy. For others, a condition may have come on suddenly. No matter how adaptable and flexible your personality may be, illness is guaranteed to be an adjustment. Most likely it will include going through the grieving process. Not only is that ok, but it is also necessary for a healthy mental state. Before I became ill, I had tummy problems off and on, and some pain, and issues with sleep, but I had good health overall and was living the busy life of a 29-year-old. Enter dysautonomia. When any form of dysautonomia is in full force it affects so many different parts and systems of the body. Like most people newly diagnosed, my daily focus became taking medications, resting, drinking water, logging heart rate, measuring blood pressure, attending physical therapy and countless specialist appointments and testing on a regular basis. With my health changing, I tried to remain positive and as symptom-free as possible. I write a blog and I focused my writing on the importance of choosing to find joy. While there is nothing at all wrong with working at a positive approach for coping with illness – attention also needs to be paid to the very natural emotions that come with loss. I began to feel out of control in my life and questioned my worth and value. Eventually I found a psychiatrist to talk to who helped me understand the grieving process and how important it is for mental health. I had never considered that I would need to take the time to grieve for what “used to be” or that I would need to pay as much attention to my mental health as I do my physical. Both are essential to having the balance and rational outlook on life that we all deserve. There are five stages in the grieving process: denial anger bargaining depression acceptance. There are no hard rules for how to go through these stages. Everyone goes through the process in their own way. But there are also no shortcuts. It is a natural desire to want to get on with life as soon as possible. To try and jump to “acceptance” and skip the difficult steps in between. But that only leads to suppressing the feelings of anger and depression that are natural and inevitable. Jumping past the stages proves only to be counterproductive. It’s ok to admit that you feel overwhelmed and a little bit scared. After all, every aspect of your life has changed. It’s ok to be sad at times too. It’s alright to worry about the future and how things will work out. It’s normal to be mad or upset at times. Without allowing yourself to face these feelings it is impossible to be able to move forward and cultivate a healthy mental state. Another point to note, is that once this process is complete it doesn’t mean that you are done. Grief does not unfold in fixed phases. There may be specific days that remind you of something you used to do in a healthier time that you can’t do now. The grief cycle will start over again multiple times throughout your life. That is normal. I am about a year and a half out from my hospital stay and diagnosis. My very active lifestyle has changed significantly to a more sedentary one and with that has come some weight gain. Little by little, I have cleaned out my dresser to remove clothes that are now two sizes too small. I’m proud of myself for being brave enough to work on this project. But, to be completely honest, I’ve cleaned out every drawer but one: my work clothes drawer. I miss my job terribly and it’s just too difficult for me to get rid of all of my work clothes right now. The truth is that if I was miraculously cured tomorrow and re-hired the next day, none of those clothes would even fit me. It’s not the clothes that I am hanging on to, it is the memory of the “old” me. The pre-dysautonomia “me”. I will clean out that drawer eventually, but it will be on my time. Because this is all a part of grieving and all our journeys are different. Return to newsletter table of contents
  7. Some people honestly don’t remember a time when they were symptom free and healthy. For others, a condition may have come on suddenly. No matter how adaptable and flexible your personality may be, illness is guaranteed to be an adjustment. Most likely it will include going through the grieving process. Not only is that ok, but it is also necessary for a healthy mental state. Before I became ill, I had tummy problems off and on, and some pain, and issues with sleep, but I had good health overall and was living the busy life of a 29-year-old. Enter dysautonomia. When any form of dysautonomia is in full force it affects so many different parts and systems of the body. Like most people newly diagnosed, my daily focus became taking medications, resting, drinking water, logging heart rate, measuring blood pressure, attending physical therapy and countless specialist appointments and testing on a regular basis. With my health changing, I tried to remain positive and as symptom-free as possible. I write a blog and I focused my writing on the importance of choosing to find joy. While there is nothing at all wrong with working at a positive approach for coping with illness – attention also needs to be paid to the very natural emotions that come with loss. I began to feel out of control in my life and questioned my worth and value. Eventually I found a psychiatrist to talk to who helped me understand the grieving process and how important it is for mental health. I had never considered that I would need to take the time to grieve for what “used to be” or that I would need to pay as much attention to my mental health as I do my physical. Both are essential to having the balance and rational outlook on life that we all deserve. There are five stages in the grieving process: denial anger bargaining depression acceptance. There are no hard rules for how to go through these stages. Everyone goes through the process in their own way. But there are also no shortcuts. It is a natural desire to want to get on with life as soon as possible. To try and jump to “acceptance” and skip the difficult steps in between. But that only leads to suppressing the feelings of anger and depression that are natural and inevitable. Jumping past the stages proves only to be counterproductive. It’s ok to admit that you feel overwhelmed and a little bit scared. After all, every aspect of your life has changed. It’s ok to be sad at times too. It’s alright to worry about the future and how things will work out. It’s normal to be mad or upset at times. Without allowing yourself to face these feelings it is impossible to be able to move forward and cultivate a healthy mental state. Another point to note, is that once this process is complete it doesn’t mean that you are done. Grief does not unfold in fixed phases. There may be specific days that remind you of something you used to do in a healthier time that you can’t do now. The grief cycle will start over again multiple times throughout your life. That is normal. I am about a year and a half out from my hospital stay and diagnosis. My very active lifestyle has changed significantly to a more sedentary one and with that has come some weight gain. Little by little, I have cleaned out my dresser to remove clothes that are now two sizes too small. I’m proud of myself for being brave enough to work on this project. But, to be completely honest, I’ve cleaned out every drawer but one: my work clothes drawer. I miss my job terribly and it’s just too difficult for me to get rid of all of my work clothes right now. The truth is that if I was miraculously cured tomorrow and re-hired the next day, none of those clothes would even fit me. It’s not the clothes that I am hanging on to, it is the memory of the “old” me. The pre-dysautonomia “me”. I will clean out that drawer eventually, but it will be on my time. Because this is all a part of grieving and all our journeys are different. Return to newsletter table of contents
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