Pictures of POTS

I have a chronic illness called Dysautonomia. My autonomic nervous system does not properly regulate vital functions such as temperature regulation, digestion, heart rate, blood pressure, and energy production. You can't see any of those problems by looking at me. If I wear make up and a smile, I look very normal.

My body is far from normal, though. Each day I struggle to do simple tasks such as waking up, eating, dressing, showering, walking around a small apartment, thinking, and folding laundry. I can usually get those things done, but it is very hard. Some days I cannot do all of those things. There are days when I fight my body just to wake up. One of the major problems is that my blood does not flow like it should. My brain does not always get the oxygen that it needs, which then causes more problems!

Sometimes my circulation is poor while I'm lying down, but it is always poor when I am sitting or standing. When I stand up the veins in my legs don't constrict to keep blood flowing back up my legs and to my heart and brain. Instead, a good portion of my blood pools in the lower half of my body. When I stand up my heartrate immediately increases to 120 or 150 to try compensate for the lack of vasoconstriction (constriction blood vessels) in my legs. After a few minutes my heart rate cannot continue to compensate, and my blood pressure drops. At this point I get extremely nauseated, dizzy, weak, and I can't think clearly. This only takes 10 minutes.

Today I'm going to show you some pictures that will help you to see a small part of what is wrong with my autonomic nervous system. These are pictures of my feet while lying down and then while standing. You can see them turning purple because of the blood pooling in them. After only two minutes of standing, my ankles become half an inch bigger around. Because the blood pooling goes all the way up to my waist, that's a lot of blood that doesn't make it back up to my heart and my brain.

Here are my pictures of POTS. POTS, by the way, stands for Postural Orthostatic Tachycardia Syndrome. That means that I have a significantly elevated heart rate upon standing, plus the accompanying symptoms that go along with POTS. POTS is a type of dysautonomia.

These are my feet while I am lying down in bed. This is their normal color.

These are my feet after standing for one minute. Some blood is pooling, and my ankles have already increased in size. After two minutes my ankles are both a full half inch bigger.

These are my feet after standing up for seven minutes. They are purple and very achy. By now the blood is not just pooling in my feet. It is pooling from my waist down. I'm lightheaded, dizzy, tired, and feeling faint.

These pictures don't show much, but hopefully they give you a little bit of an idea of what is going on inside the body of someone with dysautonomia. We look normal, but our system certainly is not functioning normally! If you want to know more about dysautonomia, please visit DINET.

When these pictures were taken I had Midodrine in my system. Midodrine is a medicine that causes vasoconstriction (it causes my blood vessels to constrict). If I did not have Midodrine in my system then the blood pooling would have been much worse, and I would not have been able to stand up for seven minutes.

Related Post: Fighting Against Gravity

Thrifty Outing

Today I took William on an outing all by myself!!! This is the first time ever that I have been able to do this, and I'm so excited. Granted, I was gone less than half an hour, I drove less than a mile total, and I'm now exhausted. But I did it. It made me feel almost like a grown up. :)

We went to The Attic, the thrift store here on campus. The thing I love about this thrift store is that everything is free! Yep, free. It fits our budget perfectly! Today we hunted for some treasures, and we found a bicycle that is just the right size for William. Not only that, but we found some training wheels to go along with it!

I'm absolutely exhausted now from this outing and from blogging. I need to go rest for a few hours. Well, actually, that's a very optimistic estimate. I need to go crash out for the rest of the afternoon, evening, and night! I hope to be recovered by tomorrow.

Enjoy the pictures from my adventerous day!

Will puts the training wheels on William's bicycle.

William shows me how excited he is about his new bike.

I went outside with Will and William to watch the first ride on the new bike. This is me and my dysautonomia accessories: water bottle, semi-reclining chair, foot stool, compression socks, and Ensure (I don't recommend that pink kind). I'm sitting back to watch William ride his new bicycle.

Will gave William a little push to get started.

Off he goes!

Can you tell that he is happy?

Indoor Gardening

For several months now William has been wanting to plant some flowers, and I have been excited about the idea. It would be nice to have some flowers around our apartment door. Last week for William's preschool we planted a few seeds and made mini greenhouses. We planted mostly herbs this time around, but plan on planting flowers soon as well. Hopefully in a couple of months I'll have some lovely flower pots to show.

These little pellets of peat moss made planting the seeds so easy!




We added lots of water. Notice the cool watering can? I got that at McDonald's in the 80s. Yes, I kept it. I'm a sentimental packrat.

The pellets soaked up a lot of water. We then pulled the netting aside and planted our seeds.

William was excited to put the flag labels in the dirt.

Our seeds sitting in their tiny greenhouses in our usually sunny windows.

It snowed the day we planted our seeds! I thought spring was already here, but winter came back for one last afternoon.

10 Minute Makeover

The Nester recently did a 4 week series called "10 Minutes to a Room You'll Love." She gave simple and practical advice for making a room prettier and more functional. Now that the series is over, she is having a linking party so that we can all share the 10 minute makeovers we did in our homes. Below are the changes I made in our house this week.

This is our dining area before. We live in a small apartment, and have virtually no office space. My husband is a seminary student, and living in a small apartment makes studying difficult and messy! Will doesn't have an office or spare corner of the apartment for studying and doing homework, so our kitchen table doubles as his study space. We are only a family of three, and we really don't need all of the table space for meals. We did want the dining area to look nice, but we didn't have a good place to keep books, notebooks, pens, Bibles, Hebrew cards, etc. They always stayed piled up on the table. And what is that in the corner???

Yep, it's a box of food. We ran out of food storage room in our kitchen. This box stayed in the corner. It was practical for us, but unsightly! The solution: I removed the box of food, and replaced it with a small bookshelf.

This bookshelf now holds all of Will's notebooks, pens, current textbooks, Bibles, and Hebrew cards. I even had room on the top for some of our favorite pictures and a fake candle (real candles are banned in our apartment complex).




That cleared off the table very nicely. But what did I do with the box of food? Look closely!




There it is! I just pushed it under the table. We don't use that side of the table, so it won't be in anyone's way, and it won't be in plain sight.

This is the after shot. It's not a perfect dining area, but it doesn't have to be perfect to be beautiful, right?

Do you want to see what others have done? Go check out the Nester's linking party!

Breakfast in Bed

I slept horribly last night. When morning came I was not even close to being ready for the day. I was so tired and sleepy. William, however, was up and ready to play at 9:30am. The poor little guy had to deal with a grumpy, sleepy, stuck-in-bed Mommy. He didn't complain at all. You know what he did instead?

William went out to the kitchen and found some food for me. He very quietly walked back into my bedroom carrying the plate of food, and he put it on my nightstand. (It was Will's leftover sandwich wrap that he had for breakfast, but hey, it was food!) William said ever so quietly, "I brought you your breakfast, Mommy." He then went back to the kitchen, took a nectarine out of the fruit bowl, and brought it in to me as well. He placed it on the plate next to the wrap. He climbed up in bed with me and said, "I brought you a nectarine, too, Mommy. You need to eat some food. It will make you feel better."

I almost cried! William was so sweet and thoughtful. I am so blessed to have such a caring little boy. God gave me a very good gift when He gave William to me as my son.

Happy Valentine's Day

As we remember the ones we love on this day, let's not forget Jesus Christ and the greatest gift of love ever given to mankind.

"This is love: not that we loved God, but that He loved us and sent His Son as an atoning sacrifice for our sins." 1 John 4:10

"But God demonstrates His own love for us in this: while we were still sinners, Christ died for us." Romans 5:8

"For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life." John 3:16


Forgiveness of sins and eternal life! That is the best gift anyone could ever receive, and it is free to all who believe on the Lord Jesus Christ.

Have a Happy Valentine's Day.

Med Trial, Part Three

I stopped taking my new med today. It was a last minute decision. I woke up this morning and decided that I didn't want to do it any more. I've had enough! The sensory overload side effect hasn't been getting any better, and for the past few days it has actually been worse. If the medicine was going to be helpful, I should have noticed it by now.

At first we thought the med might be helping with brain fog/cognitive difficulties, but for the past 3 or 4 days I have actually had more trouble than normal with brain fog. The "better brain days" that I was having must have been for some other reason. Maybe I was sleeping better and had less alpha intrusions during my sleep. Maybe my brain was just getting more blood flow and oxygen. Maybe my symptoms were just cycling. Who knows. There are so many variables, and so many little things that can have a huge effect on my symptoms.

All we know now is that if the med was helping, it wasn't doing much, and we do know that it has caused an increase in sensory overload. Normal sounds are overwhelming and actually painful. I'm tired of having to stay in my bedroom to keep away from noises. I'd rather be with my family and be brain fogged than have to hide away and be able to think more clearly.

I am done with med trials for a while. I need a break. I'm ready for "normal" life, such as it is. :)

A Boy Lives Here

Lines of cars appear around my house. They are proof that a little boy lives here. He is playing and using his imagination. The cars in these lines are "racing." They slowly migrate around the house as they race. Sometimes I trip on them as I come around a corner, but that's okay. I like seeing his cars all over the place. It makes me smile. One of these days he will be all grown, and I will miss the cars. For now I will enjoy them.

The line of cars - proof that a little boy is around here somewhere.

There he is.

William and His Cars

Cardboard Testimony

What would my cardboard testimony say?

Perhaps:

------------------------
Fighting daily weakness and fatigue
~

Resting and trusting in God's strength
-------------------------

or

-------------------------

living in a disabled body

~

joyously looking forward to heaven

and a resurrection body

-------------------------

or

-------------------------

Dead in my sins

~

Alive in Christ

-------------------------

What would your cardboard testimony say?

Leave a comment and share with us!

Chopsticks

Last weekend our internet was acting up again (more problems from the ice storm). Then on Saturday night our electricity went out. We just laughed! We thought it was quite funny. The ice storm had been a week and a half ago, and our electricity finally decided to quit. It happened right at supper time (of course!), so we headed to the mall for some great Chinese food.

I was eating my supper with chopsticks, and William said, "I want to use those." At first I just ignored him. The second time I tried to discourage him from using chopsticks. I had good intentions. I didn't want him to get frustrated because he couldn't use them. Chopsticks are hard to use after all. After the third request we gave him some chopsticks. I was expecting a mess, and expecting William to get very frustrated and discouraged. Boy, was I wrong! William picked up a piece of chicken on the first try! He then proceeded to eat almsot the rest of his meal with chopsticks!!! We didn't have to teach him how to use chopsticks, he just did it. That'll teach me to never discourage my child from trying something new!

We brought the chop sticks home for William to keep using. Just to prove that my three year old can indeed use chopsticks, here's a picture of him using them at home.

Med Trial, Part Two

Things are going much better now with the med trial. We lowered the dose, and this has helped tremendously. I'm still not sure if the medicine is helpful or not, but at least I don't have the awful side effects. I'm still struggling a little bit with two side effects, more burning in my hands and extra sensory overload. Those are symptoms that I have anyway, but they are made worse on this medication. Hopefully this side effect will lessen in time.

One thing that the medicine may actually be helping with is brain fog! My head has been much clearer lately. Even when I am crashed out physically and unable to get out of bed, I have been able to think. My thinking isn't at 100%. I wouldn't be able to write any 10 page papers for Bible College like I did in the past, but I am able to think more clearly again. This is wonderful. I had forgotten what a delight it is to be able to think! To read and actually think about what I'm reading. To be able to file papers without feeling like it is a battle to figure it all out. To be able to carry on a conversation and know what is going on. Wow, I could get used to this!

Ice Storm

We recently had an ice storm in Kentucky. It was beautiful, but it was also destructive. Hundreds of thousands of people were without electricity, and many still don't have power. We are very thankful that we never lost electricity at our apartment. We lost our internet connection for 5 days, but that is a very small problem compared to those many other people faced.

Our apartment complex in the snow and ice

A tree sparkling in the sunshine

Pine trees covered in ice and snow

It was so beautiful!