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Missy M

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About Missy M

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  1. I have chronic problems with edema from my Dysautonomia. My doctor prescribes a diuretic which helps (it does not add to my blood pressure instability, which they always worry about with POTS). In addition, water exercise helps my edema. This makes sense. I've read that water exercise is good for the limbic system. We figure (without knowing) that the edema may just be part of my chronic issue with electrolyte imbalances. We also figure the chronic electrolyte imbalances are most likely caused by the autonomic nervous system not regulating my electrolytes properly. Hope that helps.
  2. I've had Dysautonomia for 19 years. I'm still very much alive and kicking. 🙂
  3. Editor's Note: Melissa Milton is a DINET volunteer who lends her hand to help wherever it is needed, most often on the forum. Melissa has also written articles for this newsletter, sharing her artistic view of the world with all of us. Melissa came to DINET as part of our Featured Members program and more of her art and her story can be seen on her featured page. Melissa Milton feels honored to be among the 2018 Rare Artist Contest Awardees. The annual Rare Artist Contest is sponsored by the EveryLife Foundation. The purpose of the contest is to raise awareness for rare diseases, as they are often overlooked when it comes to medical research, medical provider knowledge, etc. Melissa’s rare disease is Dysautonomia. Each awardee will have a chance to share their story and display their art piece at the Rare Artist Reception, during Rare Disease Week on Capitol Hill in February. One of Melissa’s State Senators, Senator Boozman, will be among those attending. Melissa’s art statement that will be displayed with her art is intended to raise awareness about Dysautonomia, raise awareness about how water therapy can be beneficial for someone who has it and to perhaps provide some hope for those who face their own life challenges. Melissa’s statement (below) will accompany her art piece, “Flora and Fauna” (shown at left). “My rare disease, Dysautonomia, is a neurological disorder which causes faulty instructions to be sent to the body for many “automatic” functions. It particularly sends incorrect instructions to the circulatory system. Like many of us with Dysautonomia, my circulatory system no longer supports me correctly. I am now limited in how long I can stand up (5 minutes for me) and in how long I can sit up (2-3 hours). Other than that, I have to lie down to keep my blood pressure from dropping so low I pass out, or from spiking so high, I’m at risk for stroke. As careful as I am, I still randomly pass out from low blood pressure 3-6 times a week. I am homebound and no longer drive. I became severely disabled in 2016. I took up painting in 2017 for something to do during the long hours I am forced to lie down during the day. Painting soon took on a life of its own and had become a joyful form of self-expression for me. It has also led to me making new friends (other artists) despite being homebound. It has proven to me that; indeed, one door may close on your Life, but if you search hard for a positive new door then you’ll likely find it. Like many who have Dysautonomia, I am quite limited in standing on land although I can stand for hours if chest deep in the low gravity environment of water. I spend time each day in the water, happily exercising my muscles and enjoying the freedom of movement I no longer possess on land. My physical therapy time spent in water has inspired most of my artwork. Much of it has a recurring theme of a person, object, or animal weightlessly gliding about. Some of my art pieces are underwater photographs I have taken in my therapy pool and then turned into paintings later on. This art piece, “Flora & Fauna,” is one of them. My daughter and I sat in the bottom of my therapy pool while I took a photograph of her releasing the silk roses. To me, it symbolizes one of those moments when Life requires you to let go of something you love, and you have no choice but to watch it drift away from you. Like the girl in the painting, we have to learn to let go of the roses. Otherwise, our hands won’t be free to hold on to the next good things coming our way. For those of us with rare diseases, those roses we have to let go of may be the life we had back when our bodies were healthy.” Melissa encourages other people with Dysautonomia who create art to enter the 2019 Rare Artist contest. It’s a lot of fun, and you’ll be helping raise awareness for Dysautonomia. Entries for it begin in June 2019. You may enter through the “Rare Artist.org” Page on Facebook. You may view artwork from this year’s and prior year’s Rare Artist Contest by visiting their website: https://www.rareartist.org/ DINET congratulates Melissa and all the other rare disease warriors who participated in this fantastic contest. If you have participated in something to bring awareness to Dysautonomia disorders, please let us know by emailing webmaster@dinet.org Please include the words "dysautonomia awareness" in the subject line. Return to 02/2019 Table of Contents
  4. Age specific tools for managing chronic illness I’m no expert in the field of chronic illness. Nor am I any type of medical professional. However, I AM an older adult with eighteen years of experience in dealing firsthand with a chronic illness (dysautonomia). I’ve been asked to share my experiences, observations, and opinions. I’m happy to do so in case any of it may help someone else. In my opinion, when it comes to having a chronic illness it matters where you are located in your Life Cycle. By that, I mean that your current place in your “Life Timeline” (childhood, young adulthood, middle age, older age) is a factor that impacts how you experience and cope with your chronic illness. Each phase we go through in Life can provide us with age-specific tools that may serve us in good stead during a major upheaval. I base this personal opinion on my own first-hand experiences as well as upon my observations of younger people I personally know who have a chronic illness. There are probably advantages (and disadvantages) to being in each age group when it comes to experiencing a chronic illness. I am, of course, more familiar with the advantages of being middle-aged and older-aged during a chronic illness because I didn’t begin experiencing mine until I was 40 years old. It didn’t severely disable me until I was 56 years old. I have thus lived the experience of being challenged by chronic illness later in life. One observation I would make is that by age 40 I had experienced many of Life’s ups and downs. We all experience at least some of them: Love, rejection, marriage, divorce, birth, death, the thrill of getting that new job we wanted, the melancholy of leaving an old job where we had good friends, happy beginnings, sad endings, etc. By the time I became seriously ill, some of my own Life “ups” had been magnificently exhilarating. Some of my Life “downs” had been the scorched earth variety of devastating. However, both the ups and the downs carried value because I had learned important lessons from each. For purposes of later managing what was to become my chronic illness the downs arguably contained the most important lessons because, if you think about it, our most profoundly sad Life experiences involve loss and the Life Lessons of how to cope with it. Knowing how to cope with loss and to already have strategies in place for dealing with it when it comes knocking can be an extremely valuable tool to have in one’s toolbox. This is particularly true when one begins dealing with the loss of the life one had as a healthy person. In my opinion, a person like me who experiences the onset of chronic illness later in life may well have this valuable tool available in their coping toolbox. Another difference appears applicable to those of us who do not become chronically ill until middle age: In my case, by that stage in my Life Cycle I (like most of us) had not only had the experience of one or more Life losses, I had also survived those losses. There’s a certain self-confidence born of surviving a bad experience or loss. Once we’ve survived one bad experience or loss, lesser bad experiences and smaller losses can seem less daunting. We now have a measuring stick (the terrible experience we survived) against which to measure subsequent bad experiences. Speaking for myself, younger me didn’t typically have the self-assured attitude enjoyed by older me of “I’ve survived some pretty terrible losses in the past. I, therefore, KNOW I can survive this.” Older me is more serene in the knowledge that if past losses haven’t defeated me, new losses certainly won’t either. This provides an additional tool for the coping toolbox that we can employ in managing the onset of a chronic illness. I have also realized that experiencing the onset of chronic illness later in life has meant that I had previously had the opportunity to experience many major life events as a healthy individual. In my case, prior to being stricken with a serious illness, I had already had an opportunity to pursue my dream of putting myself through college and law school. I had likewise had an opportunity to experience marriage and to have my babies. I had successfully pursued a career I enjoyed and had even achieved what was for me my ultimate Dream Job. I had also learned to ballroom dance and to excel in a sport I enjoyed. Although many of us with chronic illness will naturally grieve the loss of the more physically capable life we have left behind, I did not experience a sense of having “everything” taken away from me when I became disabled at an older age. This is because I had already had a chance to pursue some goals which had felt important to me and to live some Life while enjoying good health. I had gotten to DO some things I had wanted to do. Not to sound trite, but as an older person, I was able to fully appreciate the Dr. Seuss saying of “Don’t cry because it’s over. Smile because it happened.” This has been another useful coping tool for the chronic illness management toolbox. As an older person, I had also had the opportunity to get to know myself pretty well by the time my onset of chronic illness occurred. I know my individual quirks. For example, younger me wouldn’t know (as older me does) that if I silently engage in artistic, creative endeavors for a few hours, it will help calm me down if I’m feeling upset. As with many older people, I thus have tried, and true coping mechanisms I know will see me through challenging times. Older me knows just what to do to soothe my soul when I’m feeling battered by Life. This is another tool in the coping toolbox which is arguably “age group specific.” In my opinion, all of these factors add up in such as way as to provide inherent age group specific tools for those of us who are older when we cope with the onset of disability and chronic illness management. Younger people likewise arguably have age group specific tools in their coping toolboxes. Although I do not have firsthand, personal experience with such tools (since my onset of chronic illness occurred later in life), I have observed them in young adults and children I know. For example, teenagers and younger adults may be better connected with their people. This is because they are arguably more likely than we older people to communicate frequently with others through computer and smartphone technology. Such technology enables a physically limited person to “stay connected.” with others 24/7 if they’d wish. Teenagers and younger adults also possess an online savvy which may additionally provide an enhanced ability to research and better understand the nuances of their medical conditions. Such research capabilities may provide a person with a better sense of control over the situation. They may also be more predisposed to take advantage of online support groups. A teenager or young child may be more likely to have a built-in support system of family living under the same roof to assist them that an older individual may or may not have. This can be an extremely important tool in one’s toolbox, especially if the family proactively helps the teenager or child prepare for adulthood by ensuring he or she learns about appropriate assistive devices and management strategies. Any medical provider worth their salt will tell you that when it comes to treating medical illness, children are not simply smaller adults, women are not simply smaller men, and the elderly are simply younger adults with gray hair. What we can easily lose sight of is a corollary to that: The day to day coping strategies for (and management of) one’s chronic illness can likewise be very different experiences for these individual groups as well… especially with regard to where we are in our Life Cycles. Each age group brings its inherent situational strengths to the table in coping with chronic illness. It seems to me that if we of different age groups can find a way to proactively reach out to one another as mentors, all of us will benefit. If there were an organization to facilitate and coordinate such mentoring, in my opinion, the quality of many lives would likely be improved. Return to Table of Contents
  5. I agree. Sometimes simple is best.
  6. I’ve had dysautonomia for 18 years. Although in my case it has very gradually progressed over the years, and at this point does quite seriously impact my mobility, I have to say that I have no immediate plans to die. 😉
  7. Does his heart rate typically go up when his bp drops? I ask because my daughter recently got an Apple watch. She was able to set it to notify her when her heart rate drops too low or goes too high. So if your husband’s heart rate typically goes up when his bp drops down, he might consider an Apple Watch and set it to alert him when his heart rate hits a certain point. That might clue him in to take his bp. It’s just a thought.
  8. My bp often drops too low or soars too high after eating. I get resultant changes in my heart rate, etc. I’ve found it very helpful to eat smaller quantities of food. (I eat more often as a result.) Hope that helps.
  9. Mine has been soaring lately to very high ranges. The worst so far was 226/190. My only symptoms are typically a sudden headache and dizziness. In fact, the sudden headache is what clues me in to take my bp.
  10. DINET member name: Nadèche Hanique Nadèche's hometown: Brabant Province, Holland, Southern Netherlands Diagnosis: EDS, POTS Facebook: https://www.facebook.com/happymailforfighters/Instagram: https://www.instagram.com/happymailforfighters/ Click here to read this profile in Nadeche's native language, Dutch What inspires Nadèche's work, in her own words... I have eds, so I’ve been showing symptoms my whole life and was diagnosed when I was 11 years old. I got diagnosed with POTS when I was 19 years old, I am 21 now. For years I wanted to start my own card project, but I didn’t know how to start etc. Last year I made an Instagram account and I found out that there were other people with chronic illnesses having their own projects to support others and that ’s when I realized I should at least try it. So I posted a message on Instagram asking if anyone was interested in receiving a personalized card. I got so many requests in such a short amount of time, so I made a different account just for my project and it has been growing ever since! I’ve always wanted to help and support others. And I can do this work from my own bed, so it works very well for me personally too. Making others smile, makes me smile! I know from my own experience that it is not always easy to live with chronic illnesses, so I wanted to make the fight for others a little bit easier by supporting them and send them some happy mail to encourage them to keep fighting. I also want to make them feel less alone. I started Happy Mail for Fighters on the 29th of June 2017. So I’ve been doing this for almost a year now and I hope to continue this project for many years to come! Nadèche on family and life..... I’m the only one in my family who has these illnesses. I’m very close with my family and they always support me and help me and I’m very thankful for that! I’m also really thankful that my parents and sister help me with my project. Writing is very difficult for me so my sister writes the addresses on the envelopes and my mom brings the cards to the post office because my chronic fatigue makes it difficult to go to the post office etc. I got diagnosed when I was 11 and I got help from a medical psychologist. She helped me so much and I was so thankful! That’s when I realized that that’s what I want to do in life: helping others. It has been my dream ever since to become a medical psychologist and I study psychology now. Hopefully, I can help others cope with their illnesses and show them that life is still beautiful and you can still achieve things and follow your dreams.
  11. DINET member name: Nadèche Hanique Nadèche's hometown: Brabant Province, Holland, Southern Netherlands Diagnosis: EDS, POTS Facebook: https://www.facebook.com/happymailforfighters/Instagram: https://www.instagram.com/happymailforfighters/ Click here to read this profile in Nadeche's native language, Dutch What inspires Nadèche's work, in her own words... I have eds, so I’ve been showing symptoms my whole life and was diagnosed when I was 11 years old. I got diagnosed with POTS when I was 19 years old, I am 21 now. For years I wanted to start my own card project, but I didn’t know how to start etc. Last year I made an Instagram account and I found out that there were other people with chronic illnesses having their own projects to support others and that ’s when I realized I should at least try it. So I posted a message on Instagram asking if anyone was interested in receiving a personalized card. I got so many requests in such a short amount of time, so I made a different account just for my project and it has been growing ever since! I’ve always wanted to help and support others. And I can do this work from my own bed, so it works very well for me personally too. Making others smile, makes me smile! I know from my own experience that it is not always easy to live with chronic illnesses, so I wanted to make the fight for others a little bit easier by supporting them and send them some happy mail to encourage them to keep fighting. I also want to make them feel less alone. I started Happy Mail for Fighters on the 29th of June 2017. So I’ve been doing this for almost a year now and I hope to continue this project for many years to come! Nadèche on family and life..... I’m the only one in my family who has these illnesses. I’m very close with my family and they always support me and help me and I’m very thankful for that! I’m also really thankful that my parents and sister help me with my project. Writing is very difficult for me so my sister writes the addresses on the envelopes and my mom brings the cards to the post office because my chronic fatigue makes it difficult to go to the post office etc. I got diagnosed when I was 11 and I got help from a medical psychologist. She helped me so much and I was so thankful! That’s when I realized that that’s what I want to do in life: helping others. It has been my dream ever since to become a medical psychologist and I study psychology now. Hopefully, I can help others cope with their illnesses and show them that life is still beautiful and you can still achieve things and follow your dreams.
  12. Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen. The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon her daughter’s death, the desk was passed on to me. It was the only item inside an otherwise empty desk drawer. The note having become stuck years earlier inside the drawer's metal track may have stayed hidden had I not noticed it years later. Once found, I was determined to read it, so I tugged on it hard several times before I managed to pull it loose, tearing it a little. I unfolded it with great curiosity and found that my great grandmother had written: "Things always work out for the best for those who make the best of how things work out." That's all it said. But really, that's all it needed to say. Her signature appeared underneath. I’m no longer a teenager and have now lived enough decades to understand my great-grandmother 's wisdom. Her advice has stood me in very good stead, particularly with regard to my dysautonomia. Although my dysautonomia symptoms began eighteen years ago, it was only two years ago that they rather abruptly worsened and closed the door on my physical mobility. Suddenly, I found myself unable to stand for more than five minutes at a time, which remains true to this day. I also found myself with time limits regarding how long I could sit up. This change in my health forced me to lie supine for chunks of hours each day. Boredom quickly set in. I viewed all those hours of having to lie down as nothing more than unwanted, frustrating interruptions in my day. Then I remembered that motto: “Things always work out for the best for those who make the best of how things work out.” I set my mind to exploring how I could make the best of this immobility situation I now found myself in. I decided that one way to make the best of things might be to find something productive to do with my hands while I was lying down. One idea that came to me was to paint. I had dabbled with painting on and off since childhood. Painting while lying down seemed like a logical idea for fending off the boredom inherent in being forced to lay down so much. It seemed like it might be worth a try. If it didn’t work out, I would come up with another idea. So… my intention was to follow my great grandmother’s motto and try to make the best of how things had turned out. I was basically hoping that painting might serve as a solution to the problem of feeling frustrated, bored, and unproductive. However, it didn't take long for the painting activities to quickly assume a life of their own. They immediately transformed my hours of frustration and boredom into hours of delightful fun. I no longer feel frustrated or bored at all when the time comes for me to lie down. To my surprise, there have been other unforeseen, positive, ripple effects that have come from painting again. I’ve formed new friendships with some other local artists (who are very accepting of my physical limitations). I have been pleasantly surprised at being approached by a few people interested in buying my art. None of this would have happened if not for my attempts to follow that motto. I look back now and realize that before following my great grandmother's words, my energy was focused on the frustration of the situation instead of the betterment of it. I viewed having to lie down as an interruption of all-those-things-I-wanted-to-be-doing-instead, and that was that. Being constantly frustrated with the situation had put my mind in a negative place. In sharp contrast, I now view the daily lying down episodes as “Okay, now it’s time to shift gears and paint for a while.” The hours swiftly fly and I am having fun while waiting for my body to reboot and allow me to sit/stand up again. I have my great grandmother’s motto to thank for this. Remembering to “Make the best of how things turn out” is, for me, a very powerful perspective shifter. It has helped me tremendously in adapting to my new physical limitations. When it comes to adjusting to my dysautonomia symptoms, I now proactively challenge myself to seek out ways to respond to the question “How can I make the best of this?” This shift in perspective has definitely helped me to maintain a happier life despite my physical limitations and life-altering circumstances. I feel lucky and grateful to have found her words when I did. Likewise, I hope you are able to find my great grandmother’s motto helpful as you work through your own unique dysautonomia challenges. Those of us with dysautonomia are each a little bit different but are also so much the same. You are not alone. Editor's note: Missy's art can be seen on her website Return to newsletter
  13. When I wore a Holter monitor it picked up enough bradycardia and tachycardia that it led my GP to refer me to an electrophysiology cardiologist. He was the one who recognized my symptoms and diagnosed me properly. He then ran additional tests to confirm my diagnosis. So the holter monitoring was very beneficial for me in that respect. Now that I am diagnosed they do not hook me up to holter monitors anymore. They DO hook me up to do ekgs when they run occasional tests such as treadmill testing.
  14. My docs wrote off my livedo reticularis to either being the result of my inherited autoimmune disease (autoimmunes can be a commonly known cause) or my Ehlers Danlos Syndrome (another commonly known cause). One in three people with dysautonomia also have EDS (Ehlers Danlos Syndrome), so I see EDS and livedo reticularis mentioned fairly often in various dysautonomia forums.
  15. One suggestion could be to keep a blood pressure cuff on your nightstand and take your blood pressure upon awakening (before you sit up or stand up). It’ll show you (and your doctor) what your heart rate and bp are doing. Then after you’ve stood up and walked around a few minutes, take it again (while still standing). Later on, when everything feels “calm” and you don’t feel dizzy or weird or anything take a reading with the blood pressure cuff again. The “before and after” various readings might help you and your doctor figure out whether the tachycardia is in response to your blood pressure dropping. I know my own doctor found my wrist blood pressure cuff readings very useful. They led him to order specific medical tests, and helped him more specifically advise me what I should do when certain bp cuff readings occur.
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