Frequently Asked Questions

How are you doing?

This is the most common question that I get, and it is a hard one to answer. My most common answer to this question is, "I'm doing okay," or "I am doing well." That doesn’t mean, though, that I am physically feeling well. I never actually feel well. I am always tired, always weak, and always sleepy. In addition to that, I have any combination of the following: headache, nausea, tachycardia, blood pressure that is dropping, blurred vision, numb fingers, pain, sensory overload, difficulty thinking, shortness of breath, dizziness, lightheadedness, and possibly more.

My body doesn't feel well, but some days are better than others. It would bore people (myself included) to always say how I am feeling physically. Plus, I prefer not to think about my constant ailments. I’m not in denial; it’s just that these symptoms are now “normal” for me anyway. It is best to just think of them as such and keep on living life.

So what do I actually mean when I say I’m doing well? I mean that in every way besides physically, I am doing well. I am content with the life God has given me, even with the physical struggles. I am happy to be alive, to be able to smile and talk with others. I am enjoying my husband, my kids, my family and friends. I am pleased to be able to do the things I can do. I am thankful for the many blessings God has given me. I am grateful for God’s great love for me. Even amidst the trials of life, I can say with the hymn writer, “It is well with my soul.”

What is your chronic illness?

I have been diagnosed with dysautonomia. It is a dysfunction of the autonomic nervous system, which controls all of the automatic functions of the body. Basically, my internal regulator of everything (heart rate, blood pressure, temperature, energy production, sensory perception, etc.) is not regulating properly. This causes a wide variety of debilitating symptoms.

I have gastroparesis, which is a partial to full paralysis of the stomach. Thankfully, my stomach is only partially paralyzed. I am still able to eat, but I have to make sure that I do not eat too much fiber or fat, which slow digestion. I am on a low fat, low fiber diet. Occasionally I will have "gastroparesis flares" and I have to go to a soft foods (ie, pudding) and liquid diet for a few days. It can be hard to get the calories and nutrients I need during this time. Usually it only lasts a few days, though, and then I am able to go back to my regular low fat, low fiber diet.

Through a few sleep studies, we found that I have three different sleep disorders: insomnia, hypersomnia, and alpha-delta sleep. Most people are familiar with insomnia. It means that I have a hard time falling asleep and staying asleep. I also have hypersomnia, which means that no matter how much I sleep, I am still sleepy! Alpha-delta sleep is also known as alpha intrusions. When I am sleeping I have too much alpha brain wave activity, which leads to non-restorative sleep. It means that I am sleeping, but my brain waves are continuing as if I am awake. I never wake up in the morning feeling refreshed; I feel just as tired and sleepy as when I went to bed.

I have EDS III (Ehlers-Danlos Syndrome Type Three). This is a genetic condition that causes a faulty collagen production. Collagen is a protein that adds strength and elasticity to connective tissues. It holds joints and skin together. Some of the symptoms I have as a result of this are loose and hypermobile joints, joint pain, and a heart murmur that comes and goes. One of the problems with EDS III is that veins can be too elastic, allowing blood to pool in the legs, arms, and abdomen. This has not caused my dysautonomia, but it does exacerbate the symptoms of blood pooling that I already have. 

I have ME/CFS. This isn't a diagnosis I have spoken about frequently because not everyone believes that it is real, so it causes less controversy if I ignore the diagnosis. However, ignoring the reality of a difficult diagnosis like this is not helpful for me or for anyone with ME/CFS. It just causes further silence about a devastating illness that needs to have more attention, research, doctors, and advocates. ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. One of the classic ME/CFS symptoms is post-exertional malaise, and this is one of my most debilitating symptoms. Post-Exertional Malaise (PEM) is excessive exhaustion that is caused by exertion, whether it is physical or mental exertion. The resulting exhaustion is far out of proportion to the amount of physical or mental effort that was put forth. Someone who has PEM may be able to easily walk 1/4 of a mile one day, and then the next day not be able to walk farther than 100 feet because their body has not recovered from the previous day's exertion.

My doctors believe that I have a mitochondrial disease (Mito for short) as a root cause for most of my health problems. Mitochondrial disease would not cause the EDS that I have, but it could be the root cause of everything else. There are many types of mitochondrial diseases, and they are generally considered progressive.

How long have you had dysautonomia?

I think I have had dysautonomia since I was about 10 years old. That is when I first had unexplained symptoms of nausea and vomiting, which I later discovered were likely due to gastroparesis. My health problems didn’t flare up badly, though, until I was 14. I was first diagnosed with dysautonomia at the age of 15. EDS III is a genetic condition that I have had since birth. Although it is not the primary cause of my dysautonomia, it does exacerbate my symptom of blood pooling.

What was the process of being diagnosed like for you?

It was a long process, and different diagnoses have been added over the years. I think the first diagnosis came when I was 12 years old. I believe that is when I was first diagnosed with EDS III. At that age I started having problems with ligaments tearing in my feet. I remember a doctor doing the Beighton Scale assessment on me, and I remember being told that I was too flexible. I don't remember hearing the specific diagnosis of "Ehlers-Danlos Syndrome," but the description and testing were the same as what is done for EDS type III. Years later, in my 20s, a dysautonomia specialist confirmed the EDS diagnosis. The diagnosis was confirmed again in my 30s by a geneticist.

My first dysautonomia diagnosis came when I was a teenager. I was a year-round competitive swimmer, and when I was 14, I started having breathing difficulty in swim practice. My doctor thought that I had exercise-induced asthma, so I was put on an inhaler, but it didn't really help. I went to asthma and allergy specialists, and they tried all they could, but it didn't help much.

My breathing difficulties while swimming continued, and they slowly grew worse. I kept on swimming, but I had to get out of the pool frequently to catch my breath. Sometimes I would go outside for 10 minutes until I could breathe more easily. Beyond the breathing difficulties, it became hard to keep up in swim practice because I would get tired much more quickly than I did previously.

Eventually, at a doctor's appointment, a nurse noticed that my heart rate was a little fast. It was 88 at the time, and it should have been about 50. I had never noticed that my heart was beating so quickly, but once I learned to check my heart rate regularly, I would find that my heart rate was usually 120 while resting. My primary doctor referred me to a pediatric cardiologist. This doctor suspected Neurocardiogenic Syncope, and she referred me to an electrophysiologist for further testing.

I was given a Tilt Table Test at the age of 15, and I was diagnosed with Neurocardiogenic Syncope (NCS). After consulting with a dysautonomia specialist, my diagnosis was changed from NCS to POTS (Postural Orthostatic Tachycardia Syndrome). And the POTS diagnosis has stayed ever since, although my doctors typically use the term "dysautonomia" for me now instead.

I had to quit swimming when I was 15. I didn't want to quit, but my health was such that it was not wise to keep swimming. I remained as active as I could, though. I continued to see my cardiologist for a while for treatment. My health improved for a couple of years for unknown reasons. I was never back to full strength and energy, and my breathing problems never completely went away, but they no longer drastically impacted my life. I just had to take things at a slower pace than most, and I needed to sleep more than many others my age did.

When I was 19 my health began to slowly deteriorate again. By the time I was 23 I had to quit work because I didn't have enough energy to work part-time anymore. At this point, doctors started looking for other illnesses besides POTS. I was tested for things like Myasthenia Gravis and Multiple Sclerosis, but all of the tests came back negative. The only other diagnoses that were found were ones that were connected in some way to dysautonomia/POTS. When I was 26 and 27, I was diagnosed with Gastroparesis, Alpha-Delta Sleep, and Chronic Fatigue Syndrome, and my doctors started to suspect a Mitochondrial Disease as a root cause for my health problems. A migraine diagnosis came when I was about 28.

I am 42 now, and not much has changed with my diagnoses since I was in my 20s. I am finished with the diagnostic process for the time being, and I am thankful for that. My health continues to change slightly over time as some symptoms grow in severity and others lessen. I look into new research findings and treatment options. We tweak medications and supplements as needed. But overall my health is finally stable, even if it isn't good, and I am content with the diagnoses we have confirmed.

Is your health getting any better?
My health has its ups and downs, but in general, no, it isn’t getting any better. You may hear me mention recovering from my crash in the fall of 2010, but this doesn’t mean recovering back to being healthy or even recovering back to my previous baseline from the summer of 2010. I have not been able to get back to feeling as "good" as I did that summer. I had a small "crash" in the spring of 2014 which you will also see me talk about on my blog. I never had a chance to recover completely from the crash of 2014. I had a difficult few months in the summer of 2015, which set me back a lot. I lost a lot of spoons and it took a year to regain as much strength and energy as I could. In recent years I have been pouring a lot of my energy into my two littles boys. At times this has caused my health to deteriorate, and at other times I have been able to regain some strength. I never know what to expect from one month to the next, but overall my health isn't getting better, and it isn't expected to do so.

What is your long term prognosis? Will this get better or worse? Is it life threatening?

It is hard to say what my health will be like long term. There is still much that is unknown about dysautonomia. Apart from a miracle I will have dysautonomia for the rest of my life. If it turns out that the root cause of my dysautonomia is indeed a mitochondrial disease, then my condition may progress until it is fatal. That could be 5 years away; it could be 35 years. We really don't know, but my life is still in the Lord's hands, right where it always was.

My long term prognosis may seem bleak, but God has a purpose even in this. God is sovereign, and He is able to heal me. However, He does not have to heal me. He is God! It may be that He has a better plan for me that involves dysautonomia and mitochondrial disease for all of my earthly life. God can use even this for my good and for His glory.

Why do you not like the heat?

My body does not tolerate heat well at all anymore. When I was growing up in Virginia I loved to go to the pool on a summer afternoon. I’d play in the heat and not think anything of it. Now, however, my body does not regulate temperature properly. Even if I am having a good day, once I am in the heat I will crash quickly. Anything above 72 degrees is extra tiring for me, and the hotter it is the more quickly it tires me out. If I am in the sun I cannot tolerate temperatures above 65 degrees very well.

I wear a cooling vest when we go out if the temperature is above 75 degrees. This helps some, but doesn’t come close to fixing my heat intolerance. One of the problems with heat is that it dilates your blood vessels. The blood vessels in a person's legs and abdomen are supposed to constrict when they are upright in order to combat gravity and keep blood flowing to the heart, lungs, and brain. My blood vessels, however, do not constrict well. Being in the heat causes them to constrict even less, and blood pools rapidly in my legs. I very quickly become nauseated, dizzy, lightheaded, weak, tired, and confused. Lack of sufficient blood flow makes one feel miserable!

If I have to go out when it is hot, I will pay for it for several days afterward. We take every precaution we can. This includes using a wheelchair, wearing a cooling vest, wearing ice around my neck, and cooling the van before I go out, but I still don’t do well. Just the brief trip in the heat from a handicap parking spot into the store or doctor’s office will wipe me out. It may take a week to recover from the few minutes here and there in 85 degree heat. If it is above 80 degrees outside it is best for me to not leave the house at all.

What do you do during the day?

On Monday-Friday I wake up around 9:00, and I do my best to take care of Stafford and Gresham during the day. Will takes care of Stafford in the morning while I am still sleeping. He works in his basement office, and Stafford goes downstairs with him in the morning. After Gresham and I have gotten up and eaten breakfast, Stafford comes upstairs to play. 

Stafford goes to preschool at noon. Will takes him to school, and then he comes home for lunch with Gresham and me. At 1:00 Will goes in to the office, and Gresham and I take naps. I usually get up when Stafford comes home at 3:15, and I spend time with him for the rest of the afternoon. When Gresham wakes up, we have snack time together. And then when Will comes home from work around 5:30, I go to bed.

I spend the evening resting in bed. Will brings supper to me in bed. After that, if I feel well enough, I read my Bible, blog, text with friends, practice German, or crochet. If I don't feel well enough for any of that, then I watch a tv show. Sometimes I take a second nap.

The weekend is my time to rest and recover so that I can take care of the little boys again Monday-Friday. On Saturday and Sunday I sleep in, and I usually stay in bed until noon or 1:00. I get up briefly to spend time with my family, and then I am often back in bed for rest time in the early afternoon. I don't usually need to take a nap on the weekends since I sleep in on weekend mornings, so I try to be productive while resting in the afternoon. I get caught up on things like paperwork and paying bills. 

Will and I spend time together at the end of most days. Sometimes we have an hour or two together. Other times we only have 30 minutes before we are falling asleep.

I have not been able to attend church regularly since 2009. When I do attend a church service, I find that it takes a few days to recover from the exertion and the noise level. My migraines and fatigue flare up badly when I go to church, so it is not something I can do regularly. I can only plan on attending church if I know I will have full-time help for a day or two after attending a service. I miss being able to go to church.

When I have the opportunity I like to get out of the house for something fun. This usually happens once every 2-4  weeks. Sometimes I will go to a school event for my kids. Other times I enjoy a brief outing to a restaurant with my family.  When the weather is nice, and my energy allows, I like to spend time outside in our yard or walking on the sidewalk with my little boys. We also enjoy going to the library a few times a year.

Because I am not able to leave my home frequently, I have a few friends who come to visit me regularly. It is always a blessing to have a visit from a friend!

What are your symptoms?

On any given day, I have some combination of the following symptoms:

• Tachycardia
• Lightheadedness
• Dizziness
• Muscle weakness
• Fatigue
• Post-Exertional Malaise
• Fainting/near fainting
• Headaches and migraines
• Shortness of breath
• Brain Fog
• Blood pooling in limbs
• Intolerance to heat
• Burning feet
• Low blood pressure
• Hypoglycemia
• Sleep disorders
• Numb/tingling fingers and toes
• Nausea
• Disequilibrium
• Sensory overload
• Loss of appetite
• Sensitivities to some foods
• Excessive thirst
• Muscle pain
• Joint pain

How do you feel at your best?

On a good day for me, I still have most of the above symptoms; they just aren’t as severe. I am tired and weak, but my body doesn’t give out as quickly. On a good day I can walk around the house as I need to. I can crochet. I can play on the floor with Stafford and Gresham. I can prepare quick and simple food, like a scrambled egg. I can think clearly enough to read a book. Even on a good day, though, I still need my wheelchair to leave the house. I still need to lie down for a nap in the afternoon, and I still need to rest after a shower in the evening. A good day has to have rest time, otherwise it won’t be a good day for very long.

How do you feel at your worst?

At my very worst I cannot get out of bed until 3 or 4 in the afternoon, and sometimes I don’t get out of bed at all except for bathroom trips. My legs are weak, shaky, and uncoordinated. My muscles burn as if I am lifting weights even when completely at rest. I need to lie down almost all day due to extreme fatigue, muscle weakness, and danger of falling. It is impossible to even stay in my wheelchair for more than about 15 minutes. Noise, touch, and bright lights are overwhelming. I am nauseated. I may or may not ever get a sense of hunger. I have great difficulty understanding things, remembering what question I just asked or what answer was given. I get my words all mixed up when I talk. Lightheadedness, dizziness, fatigue, weakness, and blood pooling are severe.

How do you take care of your children?

I have a lot of help from my family! I couldn't do it without them. Will helps to take care of Stafford and Gresham every day, and William and Adelaide help to take care of the little boys too. It is great having older kids who don't need my physical help, but can instead provide assistance for me! 

Here are some "Day in the Life" posts that will give you a better idea of how, with help, I took care of William and Adelaide when they were younger. My most recent Day in the Life post (from 2023) will give an example of how I make it through the day with Stafford and Gresham.

- A Day in the Life (2023)
A Day in the Life (2017)
- A Day in the Life (2014)
- A Good Day
- A Bad Day

What are the thick stockings for?

I have to wear compression stockings to help squeeze the blood out of my legs. Even with drinking lots of fluids and taking a medicine that aids in vasoconstriction, I still have a significant amount of blood pooling in my legs. Besides being painful, it prevents an adequate supply of blood from reaching my heart and brain. The stockings help to keep the excess blood from pooling. You can see pictures of the blood pooling here.

Why do you sometimes have difficulty with conversation?

One of my symptoms is cognitive difficulty (aka “brain fog”), which manifests itself in many different ways. I have short term memory difficulty. I’ll ask Will a question and then one minute later either can’t remember what he said, can’t remember what I asked, or can’t even remember that I asked anything. I can be easily confused and have difficulty processing information. Will might ask what I want to eat on my salad and I’ll be thinking in my mind, “What….do…..I….want….to….eat….on….my….salad?” I literally repeat the whole question very slowly in my mind. I have to figure out what words were said, what they each mean, what they mean together, and then figure out my answer.

Sometimes I’ll have difficulty with word recall for simple everyday words. Other times I will switch my words all up and say the opposite of what I mean. So if I say something that totally doesn’t make sense, just ignore it!

It is hard for me to follow long conversations, especially long phone conversations or conversations in a noisy room. If I keep saying, “Huh?” or “I’m sorry, would you repeat that?” please don’t be offended. It is either because I’m having difficulty keeping up or because I can’t separate the words from background noise in the room.

Sometimes the brain fog is barely noticeable, while other times it is a big obstacle. If I rest or get some extra sleep then the brain fog clears away mostly.

What have you learned through all of this?

God has taught me a lot over the years with dysautonomia. One of the things that I have learned is to be content with my health and physical limitations. It would be great to be able to walk, climb, and run again, but there is much more to life than physical strength and energy.

I have learned that I need to embrace this life that God has given me, not simply be content with it. Because of what we have been through, God can use Will and me in ways that He couldn’t if my health were good.

I have learned that God has a plan and a purpose even in suffering. He can use my dysautonomia for my good and for His glory. God is at work and He has a plan that is far better than anything we can imagine! There are things that God has taught me that I wouldn’t have learned were it not for what I’ve been through because of my health. Sometimes we have to take the painful road to learn, but if it brings us closer to God then it is worth every step of the way.

I have learned more about God’s sovereignty. Yes, God is sovereign and He could heal me if He chose to do so. However, since God is sovereign, He is under no obligation to heal me. He is God! He can do whatever pleases Him and brings Him glory. We often put God in a little box and think of Him as simply someone from Whom to ask favors. However, we need to keep in mind that God is so much bigger than we can understand. He is completely holy, all powerful, all knowing, and all wise. God is in control. He is not bound by time. He is above all. He is worthy of all praise, honor, and glory. God is also loving, patient, gracious and He longs to hear from His children. He wants us to pray to Him, but when we do, let’s not forget Who we are talking to! We are talking to the Maker and Sustainer of the Universe!

I have learned that I can trust God no matter what. There are a lot of unknowns that come along with living with dysautonomia. So far treatment hasn't produced any dramatic improvement in my health. Barring a miracle I will probably be disabled for the rest of my life. But that is okay. I want whatever God's will is for me. I want God to be glorified in my life whether I am sick or healthy. If living a life with dysautonomia will bring the most glory to God, then so be it. After considering all He has done for me, suffering a little bit with dysautonomia for a few years on earth is a small sacrifice to make. God made the ultimate sacrifice for me when He sent His Son to die on the cross. Jesus died a horrible death. The situation was not good, but God used it for great good - the salvation of all who believe!!! Jesus knows what suffering is. God knows what sacrifice is. I can certainly trust Him to know what He is doing in my life. It is worth following God and obeying Him at any cost.


  1. I am so glad you explained the mental fog! I have a very hard time with this and no one seems to understand. I was beginning to think I was going crazy.

  2. Thank you! I appreciate the fact that someone else understands. It has been so nice to "meet" you on here. I will pray for you. Keep the faith!

    Shauna Chance

  3. Thank You! I felt like someone reach inside of me and wrote the words I want to say. I myself am a 'mito' fighter. I have had a long list of very odd symptoms since the age of 10 and at 40 they started to piece it together. It is a very hard thing to explain to others.

    Thanks again!

    Annette Brown
    Pennsylvania with MCAD/SCAD

  4. Hi Annette,

    Thanks so much for taking the time to read my blog. I'm glad that the words I wrote could be the words that you wanted to say! It is hard to describe dysautonomia and/or mito. They are such complicated illnesses! Keep on fighting mito! And know that you are always welcome here at Cranberry Tea Time.


  5. I would love to get into blogging but don't really know where to begin lo. would love to talk with you I was diagnosed with POTS in my early 20's. I also have SVT. I have been on Metaprolol sp? and Nitro-Stat for years. Thee are so few with our condition that my cardiologist has only seen around 4 cases of this and I am his youngest. Many blessings and prayers to you:)


  6. Praying for you tonight, sweet sister. I had gastropareisis last year for several months after having my gall bladder removed the old fashioned way... when I read that word here in your list of symptoms, my heart jumped.

    Thank you for sharing your story with us. Blessings to you as you keep walking in faith.

  7. Thanks for sharing your story! I don't know why I haven't found your blog before. I was diagnosed with POTS almost two years ago and have read and researched everything I could get my hands on. I also have HEDS. My condition has improved so much since I began seeing Dr. Suleman in Dallas. I was where you are when I was diagnosed, and now, with salt tablets, lots of water, daily exercise (mild!) and supplements like magnesium, I feel about an 8 out of 10 most days! Praise the Lord! We still have so much to be thankful for, don't we?


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