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 well.” That doesn’t mean, though, that I am physically feeling well. To be honest, I never 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 plummeting, blurred vision, numb fingers, pain, sensory overload, difficulty thinking, memory problems, shortness of breath, dizziness, lightheadedness, and many more symptoms.
In a way my answer to the question, “How are you feeling?” would be, “I am feeling awful.” Truly, I am feeling awful. Some days are just less awful than others. It would bore people (myself included) to always say how I am feeling physically. Plus, to be honest, 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, son, and daughter, 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.”
While I usually do not answer based on how I’m feeling physically, if I am having a particularly difficult day with my health, then that may change my answer. Occasionally you will hear me say, “I’m doing okay.” What that usually means is that I am feeling extra tired, having difficulty thinking and processing things. I am probably incredibly weak and shaky. My blood pressure is most likely 95/65 or below, when I actually need a blood pressure of 120/70. “I’m doing okay” means that physically I can’t push myself much more before I crash. I need to lie down and rest.
Every once in a while you might actually catch me saying, “I’m not doing well.” That means that I feel like I’m about to faint or fall over from extreme muscle weakness. I stay home when I feel like this, but sometimes my symptoms get worse rapidly while I’m out and I cannot get home in time to crash.
What do you have?
I have been diagnosed with dysautonomia, 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 array 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 take melatonin nightly to make it easier for me to sleep. I also have hypersomnia. That 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. That means that I am sleeping, but my brain waves are continuing as if I am awake. I rarely, if ever, wake up in the morning feeling refreshed.
I have joint hypermobility syndrome, known in the past as EDS III (Ehlers-Danlos Syndrome Type Three). This is a genetic problem, and it means that I have faulty collagen. 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, poor wound healing, and a heart murmur that comes and goes. One of the problems with hypermobility syndrome 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. Hypermobility is not life threatening. Not everyone who is hypermobile has true hypermobility/EDS III, and not all who have hypermobility/EDS III have dysautonomia.
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 hypermobility that I have, but it could be the root cause of everything else (dysautonomia, gastroparesis, and sleep disorders). There are many types of mitochondrial diseases, and they are generally considered progressive. I am hoping that I will one day have the opportunity to finish the testing process for Mito. If you would like to read about what a mitochondrial disease is, here is a good place to start: What Is Mitochondrial Disease?
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. My health problems didn’t flare up badly, though, until I was 14, and I was diagnosed with dysautonomia at the age of 15.
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. 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 will likely progress until it is fatal. That could be 5 years away; it could be 45 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 if it is His will, He can heal me. However, He does not have to. He is God! It may be that He has a better plan for me that involves dysautonomia and mitochondrial disease. 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 73 degrees is exhausting, 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 or 80 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. Blood vessels are supposed to constrict when you are upright in order to combat gravity. Mine, though, 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 miserable!
If I have to go out when it is hot, I will pay for it for a day or two afterwards. We take every precaution we can. This includes using a wheelchair, wearing a cooling vest, 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 day or two to recover from the few minutes here and there spent in the heat. This means that if I have a doctor’s appointment on Friday and it is hot outside, I won't be able to make it to church on Sunday because I am still recovering from exposure to heat.
What do you do during the day?
I usually wake up around 9am. My body doesn’t move too well first thing in the morning, so I usually stay in bed until about noon. During this time I eat breakfast in bed, do my devotions, read, and/or work on email.
On the afternoons that I am doing well enough I stay home with the children so that Will can do work for the church. Adelaide usually takes a 2 hour nap during this time, and I have rest time during her nap. After nap/rest time we play and read together. If I’m not doing well we watch a movie. If I’m really not doing well then I call Will and he comes home.
When I am able I also do some work in the afternoon. I work on paying bills, keeping things organized around the house, and online volunteer work for DINET.
Will cooks supper around 6pm and we eat together and spend the early part of the evening together. I usually have to go to bed by 8pm, and Will stays up with the children, puts them to bed, and takes care of doing the dishes and cleaning up the apartment.
While in bed in the evening I work on email, crocheting, or blogging. I catch up with friends on Facebook, and I read books. If I am really tired then I just watch television or a movie and save productivity for another day.
I used to try to go to church every Sunday, but I haven’t been able to since 2009. I sometimes do still drag myself out of bed on Sunday mornings, but when I do it can take a few days for me to recover. I miss being at church regularly on Sundays.
Once a week I talk to my friend, Dorina, on the phone. I am not able to talk on the phone much because it is hard for me to follow conversations, especially if I can’t see the face of the person I’m talking to. Even though it’s difficult, I make sure that I’m able to chat with Dorina regularly. She is my original “cranberry tea time” girlfriend after all!
When I have the opportunity I like to get out of the house. This usually happens once every week or two if the weather is good and if I'm feeling up for it. Sometimes I will join the family on a Wal-Mart shopping trip. Sometimes I will go to a friend’s house to visit. Sometimes there are fun small town events like parades, fairs, rummage sales, and craft shows, and those are so much fun! My in-laws live nearby, and we like to go visit them and play with the puppies. When the weather is nice I like to sit outside in my reclining chair to enjoy the fresh air and flowers.
What exactly are your symptoms?
On any given day, I have some combination of the following symptoms:
• Muscle weakness
• Loss of balance and coordination, especially in the morning or when I am extremely tired
• Exercise intolerance
• Blurry Vision
• Excellent hearing, but difficulty understanding
• Fainting/near fainting
• Shortness of breath
• Cognitive difficulties (memory problems, difficulty following conversations, slow information processing, general "brain fog")
• Blood pooling in limbs
• Intolerance to heat
• Burning feet
• Low blood pressure
• Sleep disorders
• Numb/tingling fingers and toes
• Back pain
• Aching neck and shoulders
• Chemical sensitivities
• Sensory overload
• Loss of appetite
• Sensitivities to some foods
• Excessive thirst
• Joint pain
• Fluctuating weight
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 very 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 William and Adelaide if I am lying down. 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 and rest 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, especially if I lie on my back. When I lie down with my eyes closed I feel like I’m rocking in a boat. 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.
Can dysautonomia be passed on to William and Adelaide?
If I have a mitochondrial disease, it is possible that this could be passed on to one or both of our children. We would have to know exactly which type I have, though, before it can be determined if William and Adelaide are at risk for getting a mitochondrial disease or not. If I do have “just” dysautonomia it is still possible that it could be passed on. There is sometimes a genetic connection with dysautonomia in families.
How do you take care of William and Adelaide?
I have a lot of help from Will, my family, and friends. Currently I don’t take care of William and Adelaide by myself for more than a few hours on some afternoons. Adelaide goes to a friend's home in the mornings Monday-Friday, and William is in school most of the day. Grandparents and friends help out as needed too.
William is at an age where he is very helpful and understanding when I am not feeling well. He is content to play by himself or watch a movie with me on the bad days. One of his favorite things to do is climb in bed with me to watch the old TV show, Flipper, together on my laptop.
Adelaide is at an age where she requires a lot of work even though she is well behaved. Keeping up with diaper changes, drinks, and snacks can be tiring. The up and down work is hard. But otherwise on a day when I am feeling “good” it really isn’t too hard for me to take care of Adelaide for a few hours. She is my little buddy. She likes to be near me, talk to me, and do what I’m doing. She causes very little trouble; she just wants to be near me, be loved, and be snuggled.
I need to document a current “day in the life” to post, but if you want to read detailed versions of a day in my life from two years ago, you can find them here:
- A Good Day
- A Bad Day
Why do you carry around a water bottle?
I am supposed to drink lots of fluids (and eat lots of salt). This helps my body to retain fluids, which helps to build blood volume. An increased blood volume means a higher blood pressure, lower pulse, and more blood to circulate to my heart, brain, and other vital organs.
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 sit in a recliner during church?
Part of the reason for this is related to the blood pooling in my legs. Compression stockings, fluids, and my medicine still only partially helps blood flow. I prop my feet up in the recliner so that I don’t have too much blood pooling in my legs. If too much blood pools I will faint.
I also have to sit in a recliner because I do not have the physical strength to safely hold myself in a sitting position for more half an hour. In the past I often had to leave church early, or was unable to make it at all, simply because I could not continue to sit. Using a recliner enables me to make it through a whole church service.
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’ve become very aware of each step in the mental process. 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. Brain fog is the reason I like simple tv shows like I Dream of Jeannie. There isn’t much of a plot to figure out. It is easy to watch!
What have you learned through all of this?
This is a big question! I could go on and on and write a book. Maybe someday I will, but for now I’ll try to summarize.
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. Besides, I really don’t have it so bad. There are some people in the world who are more disabled than I, but don’t have anyone to take care of them. I have been blessed with a wonderful husband, son, daughter, and family to help me. I have a wheelchair and a comfortable bed at night. Many people don’t have that.
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 severe 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.