Laura Seil Ruszczyk

@laura-ruszczyk | contributor
Laura Seil Ruszczyk lives in Western New York with her husband, two kids and two poodles. Her family also includes another son and his fiancé. Ruszczyk retired from her job as an elementary school counselor due to dysautonomia, the deregulation of the autonomic nervous system (ANS). The ANS controls such functions as heart rate, blood pressure, temperature control and digestion. She is completing  a book on her journey  with dysautonomia. She has also accumulated more diagnoses over the years including Sjogrens Syndrome; Ehlers Danlos Syndrome; Mitochondria Myopathy; Hypothyroidism; Pancreatitis; and small fiber neuropathy. She also has Ehlers Danlos Syndrome, Mitochondrial Dysfunction, Sjogren’s Syndrome, autonomic neuropathy, pancrestites, diverticulitis and hypothyroidism. She loves to ride her bike.

12 Items to Keep Handy If You Have an Unpredictable Chronic Illness

Be prepared. I’m sure you have heard this motto perhaps from your mother, father, teacher, employer or even the Boy Scouts of America. But how do you stay prepared when you have a body that revolts? Chronic illness (in my case dysautonomia among other things) is unpredictable. One minute I may feel pretty healthy and the next my face turns ghost white or bright red, and I feel as if I might puke or pass out. Yes, the unpredictability of living with a faulty autonomic nervous system or any chronic condition is daunting. But there are some things we can do to be as prepared as possible for what occurs in our daily life. Do you carry a purse, backpack or any other type of bag? I never did until about seven years ago when hydration became a key ingredient in tackling dysautonomia. Now I recommend some sort of bag to carry on your person or in your car at all times. My trunk holds a large utility tote with jumper cables but also several bottles of Powerade Zero and water too. Typically when I vacuum my car, I find half-filled and empty bottles of these items. I tell myself it is better to have more than enough liquids than to run out! Here is a quick list of some helpful things to carry in your purse or bag if you have an unpredictable chronic illness: 1. A medical sheet with personal health information. A medical sheet can include personal information including diagnoses, allergies, medicines, vitamins and emergency contact information. I also subscribe to the MedicAlert Foundation which provides engraved bracelets with diagnoses and backup service information in case of an emergency which medical personnel can access. 2. An extra supply of medications for unpredictable chronic illness symptoms. I keep at least two days of medications in a container for emergencies in my purse. I know the shapes and colors of each of my medicines that way I don’t worry about mixing them up! (Note! Be sure to check your state to make sure medications can be carried in a pill box rather than a prescription bottle). 3. Don’t forget the sunscreen. After a cancer scare and removal of such from my face, I have become diligent in wearing sunscreen. Remember, despite and sometimes because of our health problems, we still need to take precautions. 4. Powdered electrolyte drinks can help with unpredictable dizziness related to chronic illness. My favorite electrolyte drinks are NormaLyte and Nuun. I add free ice water to my Starbucks order and drop in the powder. Something about iced cold water makes these drinks more refreshing! 5. Sunglasses. Throw a pair of sunglasses in your purse or bag to protect sensitive eyes, and don’t forget they can also help avoid migraines. 6. A pair of athletic/ light running gloves. When my hands turn cold, it is either a sign that dysautonomia is causing blood pooling in my hands or I, in fact, am cold. Either way, symptoms will begin, and warming my hands with gloves is critical. 7. Cheater eyeglasses. Eyeglasses are a necessity because at my age I need them to read and write. 8. Trader Joe’s ginger mints. I find these to work quickly when nausea grabs ahold of me. 9. An inspirational rock. It reminds me that this life is pretty good despite my health struggles. 10. An iPhone. Nowadays phones are essential to read, write, listen to music and communicate with people. 11. Hand sanitizer. I use hand sanitizer when in public spaces to try to avert catching a virus. 12. Something warm like a sweater. I keep a sweater, flannel shirt, or sweatshirt with me at all times, even in the summer. Air conditioning can make a person with dysautonomia very cold, and since we don’t regulate temperatures, some sort of a cover-up is essential. Being prepared is important for everyone, but it can be especially critical for people with a chronic illness to help cope with changing bodies. Would you add anything to this list? Please feel free to comment with your suggestions.

How to Remind Yourself You're Worthy as Someone With Chronic Illness

Are you worthy or worthless? I posted a graphic in a Facebook group I administer recently which stated, “A body that works less does not make you worth less.” I had been feeling frustrated lately with the limitations my chronic illnesses present on a daily basis. In my mind, I plan  to take our new camper all over the country, camping day after day while biking and exploring new areas. The reality, however, is that I have been able to go on weekend getaways with my husband but naps are part of the equation. And each time we return home, I experience exaggerated symptoms and exhaustion. Living with postural orthostatic tachycardia syndrome (POTS), Sjögren’s syndrome, mitochondria myopathy and several other chronic illnesses challenges my ability to perform daily tasks. Adding a special event to a weekend, such as camping, is exciting but also creates additional obstacles. The quote I shared on Facebook resonated with many people. Those with and without chronic illness commented how much they needed this reminder that we are indeed worthy. Sometimes our minds will challenge us. Perhaps, like me, you become frustrated when plans are canceled or not even made because our bodies don’t cooperate. In the 10 years I’ve been dealing with chronic conditions, I have learned it is OK to feel unworthy at times. It happens, but we must challenge ourselves to crawl out of the bleakness and try to live the best life possible. How? Here are 14 suggestions to help us not just survive but thrive and feel worthy of a good life. When you find yourself experiencing negative self-talk, stop and sit quietly. Then challenge yourself to reframe your thinking. Deal with varied feelings. Writing, praying, biking and talking to a therapist or other trusted people helps me process emotions. What have you found helpful? Seek help in the form of a support group or counselor. Give it a try; perhaps you will find it helpful. Join an in-person or online support group. Make sure it is a reputable group and you are comfortable with how it operates. Dysautonomia International runs support groups in many states (I moderate the New York group). Find things you enjoy and do them. I love to bike, knowing I may have to stop halfway through the ride to put my feet up and rest. I always have to nap longer on biking days and cannot ride two consecutive days. I try really hard to just be thankful for the times I can strap on my helmet and go. Practice flexibility — and no, I don’t mean the flexibility that comes with Ehlers-Danlos syndrome. I need to plan ahead when big events occur. When my son graduated from high school recently, I rested for days leading up to the event, hydrated more and made sure our seats at the local stadium were near an exit. I brought in extra salty drinks to stay hydrated. And despite my best efforts, I nearly missed the celebratory dinner due to exhaustion and stomach issues. I drank a lot of water at dinner and little else, but thankfully participated. Plan, but also realize that at some point the body will revolt. This is OK; our bodies are not perfect but we are still worthy. Practice the skills that help when you’re most symptomatic. Give yourself grace and love yourself despite challenges. Try to have fun. If you have a bad day (or week) get up the next day and try again. Remember that so many things can challenge us including weather changes, added stressors and activities. Say no when you need to. Be choosy in what you plan or commit to doing. Continue to socialize with those you love. Remember we are worthy despite bodies that challenge us each day. Laugh. Humor is a great coping skill.

How to Remind Yourself You're Worthy as Someone With Chronic Illness

Are you worthy or worthless? I posted a graphic in a Facebook group I administer recently which stated, “A body that works less does not make you worth less.” I had been feeling frustrated lately with the limitations my chronic illnesses present on a daily basis. In my mind, I plan  to take our new camper all over the country, camping day after day while biking and exploring new areas. The reality, however, is that I have been able to go on weekend getaways with my husband but naps are part of the equation. And each time we return home, I experience exaggerated symptoms and exhaustion. Living with postural orthostatic tachycardia syndrome (POTS), Sjögren’s syndrome, mitochondria myopathy and several other chronic illnesses challenges my ability to perform daily tasks. Adding a special event to a weekend, such as camping, is exciting but also creates additional obstacles. The quote I shared on Facebook resonated with many people. Those with and without chronic illness commented how much they needed this reminder that we are indeed worthy. Sometimes our minds will challenge us. Perhaps, like me, you become frustrated when plans are canceled or not even made because our bodies don’t cooperate. In the 10 years I’ve been dealing with chronic conditions, I have learned it is OK to feel unworthy at times. It happens, but we must challenge ourselves to crawl out of the bleakness and try to live the best life possible. How? Here are 14 suggestions to help us not just survive but thrive and feel worthy of a good life. When you find yourself experiencing negative self-talk, stop and sit quietly. Then challenge yourself to reframe your thinking. Deal with varied feelings. Writing, praying, biking and talking to a therapist or other trusted people helps me process emotions. What have you found helpful? Seek help in the form of a support group or counselor. Give it a try; perhaps you will find it helpful. Join an in-person or online support group. Make sure it is a reputable group and you are comfortable with how it operates. Dysautonomia International runs support groups in many states (I moderate the New York group). Find things you enjoy and do them. I love to bike, knowing I may have to stop halfway through the ride to put my feet up and rest. I always have to nap longer on biking days and cannot ride two consecutive days. I try really hard to just be thankful for the times I can strap on my helmet and go. Practice flexibility — and no, I don’t mean the flexibility that comes with Ehlers-Danlos syndrome. I need to plan ahead when big events occur. When my son graduated from high school recently, I rested for days leading up to the event, hydrated more and made sure our seats at the local stadium were near an exit. I brought in extra salty drinks to stay hydrated. And despite my best efforts, I nearly missed the celebratory dinner due to exhaustion and stomach issues. I drank a lot of water at dinner and little else, but thankfully participated. Plan, but also realize that at some point the body will revolt. This is OK; our bodies are not perfect but we are still worthy. Practice the skills that help when you’re most symptomatic. Give yourself grace and love yourself despite challenges. Try to have fun. If you have a bad day (or week) get up the next day and try again. Remember that so many things can challenge us including weather changes, added stressors and activities. Say no when you need to. Be choosy in what you plan or commit to doing. Continue to socialize with those you love. Remember we are worthy despite bodies that challenge us each day. Laugh. Humor is a great coping skill.

How to Remind Yourself You're Worthy as Someone With Chronic Illness

Are you worthy or worthless? I posted a graphic in a Facebook group I administer recently which stated, “A body that works less does not make you worth less.” I had been feeling frustrated lately with the limitations my chronic illnesses present on a daily basis. In my mind, I plan  to take our new camper all over the country, camping day after day while biking and exploring new areas. The reality, however, is that I have been able to go on weekend getaways with my husband but naps are part of the equation. And each time we return home, I experience exaggerated symptoms and exhaustion. Living with postural orthostatic tachycardia syndrome (POTS), Sjögren’s syndrome, mitochondria myopathy and several other chronic illnesses challenges my ability to perform daily tasks. Adding a special event to a weekend, such as camping, is exciting but also creates additional obstacles. The quote I shared on Facebook resonated with many people. Those with and without chronic illness commented how much they needed this reminder that we are indeed worthy. Sometimes our minds will challenge us. Perhaps, like me, you become frustrated when plans are canceled or not even made because our bodies don’t cooperate. In the 10 years I’ve been dealing with chronic conditions, I have learned it is OK to feel unworthy at times. It happens, but we must challenge ourselves to crawl out of the bleakness and try to live the best life possible. How? Here are 14 suggestions to help us not just survive but thrive and feel worthy of a good life. When you find yourself experiencing negative self-talk, stop and sit quietly. Then challenge yourself to reframe your thinking. Deal with varied feelings. Writing, praying, biking and talking to a therapist or other trusted people helps me process emotions. What have you found helpful? Seek help in the form of a support group or counselor. Give it a try; perhaps you will find it helpful. Join an in-person or online support group. Make sure it is a reputable group and you are comfortable with how it operates. Dysautonomia International runs support groups in many states (I moderate the New York group). Find things you enjoy and do them. I love to bike, knowing I may have to stop halfway through the ride to put my feet up and rest. I always have to nap longer on biking days and cannot ride two consecutive days. I try really hard to just be thankful for the times I can strap on my helmet and go. Practice flexibility — and no, I don’t mean the flexibility that comes with Ehlers-Danlos syndrome. I need to plan ahead when big events occur. When my son graduated from high school recently, I rested for days leading up to the event, hydrated more and made sure our seats at the local stadium were near an exit. I brought in extra salty drinks to stay hydrated. And despite my best efforts, I nearly missed the celebratory dinner due to exhaustion and stomach issues. I drank a lot of water at dinner and little else, but thankfully participated. Plan, but also realize that at some point the body will revolt. This is OK; our bodies are not perfect but we are still worthy. Practice the skills that help when you’re most symptomatic. Give yourself grace and love yourself despite challenges. Try to have fun. If you have a bad day (or week) get up the next day and try again. Remember that so many things can challenge us including weather changes, added stressors and activities. Say no when you need to. Be choosy in what you plan or commit to doing. Continue to socialize with those you love. Remember we are worthy despite bodies that challenge us each day. Laugh. Humor is a great coping skill.

What to Do If You're Dealing With an Argumentative Doctor

I am fairly competent at advocating for my health in the last nine-plus years of dealing with dysautonomia and several other chronic conditions. But the treatment I received recently left me frustrated and questioning what I could do better the next time I deal with antagonistic medical personnel. I arrived at the hospital for a scheduled endoscopic retrograde cholangiopancreatography (ERCP). An ERCP is a procedure that combines upper gastrointestinal endoscopy and x-rays to treat problems of the bile and pancreatic ducts. The gastroenterologist surmised I was dealing with pancreatitis . I had elevated bloodwork results and many attacks in the last four months. The attacks caused excruciating pain in my upper right side through my back. It was the kind of pain that took my breath away and the only thing I could do was lie still and try to breathe. I had an ERCP performed almost a year ago for the same problem. At that time, a stent was placed (and later removed); the sphincter of Oddi muscle was cut and stretched and sludge removed. It was hoped this procedure would cure the pancreatitis but it did not. As a result, I headed to the hospital for my second ERCP. After checking in and dressing in a medical gown, the nurse took vitals and reviewed my complex medical history. Blood pressure and heart rate were elevated. The anesthesiologist came over to talk with me and seemed to immediately focus on blood pressure, which I knew was within the parameters the primary doctor deemed acceptable. I explained the blood pressure was most likely high due to the three bags of fluid I received the previous day (as fluids are necessary for me before medical procedures); the medication I take to avoid presyncopy; poor sleep and stress. While it sounds counterintuitive, once an IV saline line begins, my blood pressure typically lowers. The anesthesiologist seemed uninterested in anything I said and expressed displeasure at the medication I take to keep blood pressure up to stay conscious. I explained the cardiologist’s reasoning for the medication which was followed with the anesthesiologist saying he did not understand that treatment. “You should see functional medicine at Cleveland Clinic,” he said. “They will get to the root cause of your dysautonomia and cure you. They even cure multiple sclerosis .” This statement left me frustrated and angry. I actively volunteer with Dysautonomia International, a nonprofit that provides education and support to patients and helps lead dysautonomia research worldwide. I know for a fact there is currently no cure for dysautonomia. There is, however, promising research to help treat this population more effectively. Functional medicine, as this doctor suggested, is not a cure. I have a team of doctors who help me live my best life despite all my chronic problems. I am willing to try different modalities, but to say functional medicine would provide a cure is absurd. I believe this doctor was intimating that my issues were psychiatric. The specialists I see don’t know what the “root” cause of dysautonomia is but we do know that my heart started slowing down in my 20s after a bout with mononucleosis. We also know that mitochondria myopathy, Sjögren’s syndrome , Ehlers -Danlos syndrome and autonomic neuropathy seem intertwined. I am uncertain why this anesthesiologist provided unsolicited, inaccurate advice but I know as he kept talking and watching the monitor, my blood pressure rose. I understand it’s his job to keep me stable during surgery, but it was not in his scope to suggest functional medicine would cure me. After nearly three hours waiting and checking my vitals, I left the hospital. The ERCP is rescheduled. A few days removed from this experience, I wonder two things; was this doctor afraid of my complex medical history or was he just too lazy to deal with me? I won’t get that answer but have thought of things you and I can do to alleviate another such problem. 1. Meet with anesthesiologists ahead of time to discuss our medical needs. (I have done this in the past but had not thought there would be an issue with this procedure). 2. Have a letter from a primary doctor and/or dysautonomia specialist stating my need for fluids to help throughout any procedure, and any other helpful information. 3. Try to stay calm if another doctor spouts inaccurate information. 4. Cancel a procedure more quickly if we’re being dismissed. Remember that we don’t have to proceed if we are receiving poor treatment. We have the final say on what is done. 5. Find an advocate. My two nurses were great and tried to resolve these problems for me. 6. Let people in power know of the mistreatment. I emailed a letter to my gastroenterologist, dysautonomia specialist and primary care doctor. This resulted in two phone calls and one email to me and the assurance that this anesthesiologist will not be on my case. 7. Be direct but pleasant. Speak of our needs and the reasons for such. 8. Ask for the clinical director or someone else in charge if we are not satisfied with our situations. I spoke to the clinical director, who apologized for the treatment I received and guaranteed me the anesthesiologist would not be on my case again. 9. Handle the problem but don’t dwell on it. After all, we are not the arrogant, misinformed person. 10. Talk about the experience with someone you trust. Chronic illness is difficult to handle; add mistreatment to the mix and it multiplies the issue. I have a counselor who helps me deal with the many facets of chronic illness. This is very helpful. 11. Keep a sense of humor. Some of the things we deal with are so absurd, you need to laugh sometimes. 12. Trust your knowledge and instinct.

The Benefits of Attending Patient Conferences for Dysautonomia

I drove 400 miles to see about 600 people who have at least one thing in common with me: they each live with  dysautonomia. Dysautonomia is an umbrella term used to describe the deregulation of the autonomic nervous system (ANS). The ANS controls such vital functions as heartbeat, blood pressure, temperature regulation, digestion and pupil dilation. When this system goes haywire, many unpleasant symptoms can occur. But little of that mattered recently when I attended the seventh  annual Dysautonomia  International Conference  in Philadelphia, Pennsylvania. Upon arrival I met up with other volunteers at a planning meeting. My assignment included running an icebreaker session in the teen room at the conference (for about 40 young people) and supervising the room each morning. I had Friday night free, but knew I wanted to see the local artist creating a mural of words provided by conference goers describing our lives. I was so excited to see the word I chose — “dream”– added to the mural as one of the final touches. And the word was painted purple, which made it stand out. I have been working on integrating the concept of dreaming into my life this year despite six chronic diagnoses. Dream. A cherished aspiration, ambition or ideal. My definition of dream includes to hope and live my best life despite physical challenges. I dream and hope to do things and try to accomplish them. Driving alone to Philadelphia, which took two days, was a dream. And despite exhaustion, I stopped on the way to the hotel to stand on the steps of the Philadelphia Museum of Fine Arts and posed like Sylvester Stallone in the “Rocky” movies. Trekking alone to this conference was a challenge. And despite one serious body crash which left my gut exploding and me chugging sodium-enriched drinks before sleeping the afternoon away, the dream was successful. Was it difficult to travel alone, volunteer and attend the conference? Absolutely. But I would do it again in a heartbeat. And if you have a chance to attend such a conference, I recommend it for many reasons, including the following: It is empowering to meet other people with the same diagnoses. I met those who shared similar diagnoses, like postural orthostatic tachycardia syndrome (POTS), mitochondria myopathy, Sjogren’s syndrome; autonomic neuropathy and hypermobile Ehlers-Danlos syndrome (hEDS). I am sure there were others living with hypothyroidism too. Everyone speaks a common language. We are well educated about our diagnoses but can learn from one another. We do not compare illnesses. No one thinks they are sicker or luckier than the next. We all deal with chronic conditions and persevere the best we can. Instant friendships are formed. We have been through huge challenges and somehow that makes us value relationships more. I am certain the fact we understand one another’s medical condition allows us to connect more quickly. No one judges at these conferences. People rest on the ground, escape to a quiet place or go to their hotel room to sleep. And we all understand. The food is excellent. There are always salty snacks (to keep our blood pressure up) and healthy choices. We have dietary restrictions and are well taken care of at these conferences. There is a lot of laughter. Sure we talk about our struggles, but also laugh while facing such absurd problems. My table companions at the conference dinner laughed a lot while playing and winning the trivia night competition. Top doctors often attend. We heard from experts throughout the world. They validated our struggles and provided information and hope that they are working for better treatment. You might have the opportunity to participate in a research study. More than 100 people at this conference gave blood that will be used for DNA, RNA, serum antibody and cellular analysis and also  provided  information to researchers about their experiences with POTS. The conference energizes us to continue to raise awareness within the  medical community and dysautonomia population. Watching 11-year-old Aubrey McLin receive the volunteer of the year award for her dysautonomiaadvocacy, education and fundraising leaves  me in awe of such a poised young lady. Despite physical challenges, Aubrey and her family advocate for all of us. If you are a caregiver or loved one, there is plenty for you to do. In addition to supporting the person you attend with, you will meet others in the same role. Your bond with others will equally form quickly. And you will learn from the experts. The conference is a lot of fun! So if you are able to attend such a conference, give it a try. It will be exhausting and you may have to recoup for a week once you are home, but every second will be worth the physical challenges you face.

The Benefits of Attending Patient Conferences for Dysautonomia

I drove 400 miles to see about 600 people who have at least one thing in common with me: they each live with  dysautonomia. Dysautonomia is an umbrella term used to describe the deregulation of the autonomic nervous system (ANS). The ANS controls such vital functions as heartbeat, blood pressure, temperature regulation, digestion and pupil dilation. When this system goes haywire, many unpleasant symptoms can occur. But little of that mattered recently when I attended the seventh  annual Dysautonomia  International Conference  in Philadelphia, Pennsylvania. Upon arrival I met up with other volunteers at a planning meeting. My assignment included running an icebreaker session in the teen room at the conference (for about 40 young people) and supervising the room each morning. I had Friday night free, but knew I wanted to see the local artist creating a mural of words provided by conference goers describing our lives. I was so excited to see the word I chose — “dream”– added to the mural as one of the final touches. And the word was painted purple, which made it stand out. I have been working on integrating the concept of dreaming into my life this year despite six chronic diagnoses. Dream. A cherished aspiration, ambition or ideal. My definition of dream includes to hope and live my best life despite physical challenges. I dream and hope to do things and try to accomplish them. Driving alone to Philadelphia, which took two days, was a dream. And despite exhaustion, I stopped on the way to the hotel to stand on the steps of the Philadelphia Museum of Fine Arts and posed like Sylvester Stallone in the “Rocky” movies. Trekking alone to this conference was a challenge. And despite one serious body crash which left my gut exploding and me chugging sodium-enriched drinks before sleeping the afternoon away, the dream was successful. Was it difficult to travel alone, volunteer and attend the conference? Absolutely. But I would do it again in a heartbeat. And if you have a chance to attend such a conference, I recommend it for many reasons, including the following: It is empowering to meet other people with the same diagnoses. I met those who shared similar diagnoses, like postural orthostatic tachycardia syndrome (POTS), mitochondria myopathy, Sjogren’s syndrome; autonomic neuropathy and hypermobile Ehlers-Danlos syndrome (hEDS). I am sure there were others living with hypothyroidism too. Everyone speaks a common language. We are well educated about our diagnoses but can learn from one another. We do not compare illnesses. No one thinks they are sicker or luckier than the next. We all deal with chronic conditions and persevere the best we can. Instant friendships are formed. We have been through huge challenges and somehow that makes us value relationships more. I am certain the fact we understand one another’s medical condition allows us to connect more quickly. No one judges at these conferences. People rest on the ground, escape to a quiet place or go to their hotel room to sleep. And we all understand. The food is excellent. There are always salty snacks (to keep our blood pressure up) and healthy choices. We have dietary restrictions and are well taken care of at these conferences. There is a lot of laughter. Sure we talk about our struggles, but also laugh while facing such absurd problems. My table companions at the conference dinner laughed a lot while playing and winning the trivia night competition. Top doctors often attend. We heard from experts throughout the world. They validated our struggles and provided information and hope that they are working for better treatment. You might have the opportunity to participate in a research study. More than 100 people at this conference gave blood that will be used for DNA, RNA, serum antibody and cellular analysis and also  provided  information to researchers about their experiences with POTS. The conference energizes us to continue to raise awareness within the  medical community and dysautonomia population. Watching 11-year-old Aubrey McLin receive the volunteer of the year award for her dysautonomiaadvocacy, education and fundraising leaves  me in awe of such a poised young lady. Despite physical challenges, Aubrey and her family advocate for all of us. If you are a caregiver or loved one, there is plenty for you to do. In addition to supporting the person you attend with, you will meet others in the same role. Your bond with others will equally form quickly. And you will learn from the experts. The conference is a lot of fun! So if you are able to attend such a conference, give it a try. It will be exhausting and you may have to recoup for a week once you are home, but every second will be worth the physical challenges you face.

The Benefits of Attending Patient Conferences for Dysautonomia

I drove 400 miles to see about 600 people who have at least one thing in common with me: they each live with  dysautonomia. Dysautonomia is an umbrella term used to describe the deregulation of the autonomic nervous system (ANS). The ANS controls such vital functions as heartbeat, blood pressure, temperature regulation, digestion and pupil dilation. When this system goes haywire, many unpleasant symptoms can occur. But little of that mattered recently when I attended the seventh  annual Dysautonomia  International Conference  in Philadelphia, Pennsylvania. Upon arrival I met up with other volunteers at a planning meeting. My assignment included running an icebreaker session in the teen room at the conference (for about 40 young people) and supervising the room each morning. I had Friday night free, but knew I wanted to see the local artist creating a mural of words provided by conference goers describing our lives. I was so excited to see the word I chose — “dream”– added to the mural as one of the final touches. And the word was painted purple, which made it stand out. I have been working on integrating the concept of dreaming into my life this year despite six chronic diagnoses. Dream. A cherished aspiration, ambition or ideal. My definition of dream includes to hope and live my best life despite physical challenges. I dream and hope to do things and try to accomplish them. Driving alone to Philadelphia, which took two days, was a dream. And despite exhaustion, I stopped on the way to the hotel to stand on the steps of the Philadelphia Museum of Fine Arts and posed like Sylvester Stallone in the “Rocky” movies. Trekking alone to this conference was a challenge. And despite one serious body crash which left my gut exploding and me chugging sodium-enriched drinks before sleeping the afternoon away, the dream was successful. Was it difficult to travel alone, volunteer and attend the conference? Absolutely. But I would do it again in a heartbeat. And if you have a chance to attend such a conference, I recommend it for many reasons, including the following: It is empowering to meet other people with the same diagnoses. I met those who shared similar diagnoses, like postural orthostatic tachycardia syndrome (POTS), mitochondria myopathy, Sjogren’s syndrome; autonomic neuropathy and hypermobile Ehlers-Danlos syndrome (hEDS). I am sure there were others living with hypothyroidism too. Everyone speaks a common language. We are well educated about our diagnoses but can learn from one another. We do not compare illnesses. No one thinks they are sicker or luckier than the next. We all deal with chronic conditions and persevere the best we can. Instant friendships are formed. We have been through huge challenges and somehow that makes us value relationships more. I am certain the fact we understand one another’s medical condition allows us to connect more quickly. No one judges at these conferences. People rest on the ground, escape to a quiet place or go to their hotel room to sleep. And we all understand. The food is excellent. There are always salty snacks (to keep our blood pressure up) and healthy choices. We have dietary restrictions and are well taken care of at these conferences. There is a lot of laughter. Sure we talk about our struggles, but also laugh while facing such absurd problems. My table companions at the conference dinner laughed a lot while playing and winning the trivia night competition. Top doctors often attend. We heard from experts throughout the world. They validated our struggles and provided information and hope that they are working for better treatment. You might have the opportunity to participate in a research study. More than 100 people at this conference gave blood that will be used for DNA, RNA, serum antibody and cellular analysis and also  provided  information to researchers about their experiences with POTS. The conference energizes us to continue to raise awareness within the  medical community and dysautonomia population. Watching 11-year-old Aubrey McLin receive the volunteer of the year award for her dysautonomiaadvocacy, education and fundraising leaves  me in awe of such a poised young lady. Despite physical challenges, Aubrey and her family advocate for all of us. If you are a caregiver or loved one, there is plenty for you to do. In addition to supporting the person you attend with, you will meet others in the same role. Your bond with others will equally form quickly. And you will learn from the experts. The conference is a lot of fun! So if you are able to attend such a conference, give it a try. It will be exhausting and you may have to recoup for a week once you are home, but every second will be worth the physical challenges you face.

12 Items to Keep Handy If You Have an Unpredictable Chronic Illness

Be prepared. I’m sure you have heard this motto perhaps from your mother, father, teacher, employer or even the Boy Scouts of America. But how do you stay prepared when you have a body that revolts? Chronic illness (in my case dysautonomia among other things) is unpredictable. One minute I may feel pretty healthy and the next my face turns ghost white or bright red, and I feel as if I might puke or pass out. Yes, the unpredictability of living with a faulty autonomic nervous system or any chronic condition is daunting. But there are some things we can do to be as prepared as possible for what occurs in our daily life. Do you carry a purse, backpack or any other type of bag? I never did until about seven years ago when hydration became a key ingredient in tackling dysautonomia. Now I recommend some sort of bag to carry on your person or in your car at all times. My trunk holds a large utility tote with jumper cables but also several bottles of Powerade Zero and water too. Typically when I vacuum my car, I find half-filled and empty bottles of these items. I tell myself it is better to have more than enough liquids than to run out! Here is a quick list of some helpful things to carry in your purse or bag if you have an unpredictable chronic illness: 1. A medical sheet with personal health information. A medical sheet can include personal information including diagnoses, allergies, medicines, vitamins and emergency contact information. I also subscribe to the MedicAlert Foundation which provides engraved bracelets with diagnoses and backup service information in case of an emergency which medical personnel can access. 2. An extra supply of medications for unpredictable chronic illness symptoms. I keep at least two days of medications in a container for emergencies in my purse. I know the shapes and colors of each of my medicines that way I don’t worry about mixing them up! (Note! Be sure to check your state to make sure medications can be carried in a pill box rather than a prescription bottle). 3. Don’t forget the sunscreen. After a cancer scare and removal of such from my face, I have become diligent in wearing sunscreen. Remember, despite and sometimes because of our health problems, we still need to take precautions. 4. Powdered electrolyte drinks can help with unpredictable dizziness related to chronic illness. My favorite electrolyte drinks are NormaLyte and Nuun. I add free ice water to my Starbucks order and drop in the powder. Something about iced cold water makes these drinks more refreshing! 5. Sunglasses. Throw a pair of sunglasses in your purse or bag to protect sensitive eyes, and don’t forget they can also help avoid migraines. 6. A pair of athletic/ light running gloves. When my hands turn cold, it is either a sign that dysautonomia is causing blood pooling in my hands or I, in fact, am cold. Either way, symptoms will begin, and warming my hands with gloves is critical. 7. Cheater eyeglasses. Eyeglasses are a necessity because at my age I need them to read and write. 8. Trader Joe’s ginger mints. I find these to work quickly when nausea grabs ahold of me. 9. An inspirational rock. It reminds me that this life is pretty good despite my health struggles. 10. An iPhone. Nowadays phones are essential to read, write, listen to music and communicate with people. 11. Hand sanitizer. I use hand sanitizer when in public spaces to try to avert catching a virus. 12. Something warm like a sweater. I keep a sweater, flannel shirt, or sweatshirt with me at all times, even in the summer. Air conditioning can make a person with dysautonomia very cold, and since we don’t regulate temperatures, some sort of a cover-up is essential. Being prepared is important for everyone, but it can be especially critical for people with a chronic illness to help cope with changing bodies. Would you add anything to this list? Please feel free to comment with your suggestions.

12 Items to Keep Handy If You Have an Unpredictable Chronic Illness

Be prepared. I’m sure you have heard this motto perhaps from your mother, father, teacher, employer or even the Boy Scouts of America. But how do you stay prepared when you have a body that revolts? Chronic illness (in my case dysautonomia among other things) is unpredictable. One minute I may feel pretty healthy and the next my face turns ghost white or bright red, and I feel as if I might puke or pass out. Yes, the unpredictability of living with a faulty autonomic nervous system or any chronic condition is daunting. But there are some things we can do to be as prepared as possible for what occurs in our daily life. Do you carry a purse, backpack or any other type of bag? I never did until about seven years ago when hydration became a key ingredient in tackling dysautonomia. Now I recommend some sort of bag to carry on your person or in your car at all times. My trunk holds a large utility tote with jumper cables but also several bottles of Powerade Zero and water too. Typically when I vacuum my car, I find half-filled and empty bottles of these items. I tell myself it is better to have more than enough liquids than to run out! Here is a quick list of some helpful things to carry in your purse or bag if you have an unpredictable chronic illness: 1. A medical sheet with personal health information. A medical sheet can include personal information including diagnoses, allergies, medicines, vitamins and emergency contact information. I also subscribe to the MedicAlert Foundation which provides engraved bracelets with diagnoses and backup service information in case of an emergency which medical personnel can access. 2. An extra supply of medications for unpredictable chronic illness symptoms. I keep at least two days of medications in a container for emergencies in my purse. I know the shapes and colors of each of my medicines that way I don’t worry about mixing them up! (Note! Be sure to check your state to make sure medications can be carried in a pill box rather than a prescription bottle). 3. Don’t forget the sunscreen. After a cancer scare and removal of such from my face, I have become diligent in wearing sunscreen. Remember, despite and sometimes because of our health problems, we still need to take precautions. 4. Powdered electrolyte drinks can help with unpredictable dizziness related to chronic illness. My favorite electrolyte drinks are NormaLyte and Nuun. I add free ice water to my Starbucks order and drop in the powder. Something about iced cold water makes these drinks more refreshing! 5. Sunglasses. Throw a pair of sunglasses in your purse or bag to protect sensitive eyes, and don’t forget they can also help avoid migraines. 6. A pair of athletic/ light running gloves. When my hands turn cold, it is either a sign that dysautonomia is causing blood pooling in my hands or I, in fact, am cold. Either way, symptoms will begin, and warming my hands with gloves is critical. 7. Cheater eyeglasses. Eyeglasses are a necessity because at my age I need them to read and write. 8. Trader Joe’s ginger mints. I find these to work quickly when nausea grabs ahold of me. 9. An inspirational rock. It reminds me that this life is pretty good despite my health struggles. 10. An iPhone. Nowadays phones are essential to read, write, listen to music and communicate with people. 11. Hand sanitizer. I use hand sanitizer when in public spaces to try to avert catching a virus. 12. Something warm like a sweater. I keep a sweater, flannel shirt, or sweatshirt with me at all times, even in the summer. Air conditioning can make a person with dysautonomia very cold, and since we don’t regulate temperatures, some sort of a cover-up is essential. Being prepared is important for everyone, but it can be especially critical for people with a chronic illness to help cope with changing bodies. Would you add anything to this list? Please feel free to comment with your suggestions.