Saturday, February 28, 2009

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

77 comments:

Rona's Home Page said...

Wow!
I definitely understand having a chronic illness that no one sees.

Zona Wilson said...

Those three pictures are worth three thousand words, Rachel. I am frustrated that nothing can be done to heal your body, but keep coming back to what the Lord told Paul when he asked to be healed - "My grace is sufficient for you, for my power is made perfect in weakness." Or, as The Message puts it, "My grace is enough; it's all you need. My strength comes into its own in your weakness." You are a person who continually chooses to trust, and the Lord's heart must be so blessed by you! I know I am.

Remodeling Guy said...

Hi Rachel,

I don't know you yet, but I see that you found my twitter feed, probably through Nesting Place. I'm so glad you did. I'm sure I will find great inspiration in reading about how strong you are with the Lord's hand to hold you up! I know I'm inspired already and I wholeheartedly agree with the comment above!

Stop by Remodeling Guy anytime and I'll be back here to read more!

Thanks!

Tim @ Remodeling Guy

PS - The Nester and I are both getting a huge kick out of the fact that your first three follows on Twitter are her, me, and MARTHA STEWART! Martha Must be so proud!

emily said...

Rachel! Do you realize you posted 22 blogs in February!? Congratulations! :) I love your blog.
This post is great. I love your painted toenails (of course) and am impressed that your legs are shaved! Haha.
BTW, what I really want to know is what color your FACE was at the end of that 7 minutes! Whiter than white?
I don't know how long you crashed out after that seven missed, but I'm guessing that was a huge deal to do that for these pics.
What a creative way to describe POTS! You are so clever!
Love you,
Em

Kristen said...

I love the pictures too-- definitely a sacrifice to do that for 7 minutes! Do your feet get super cold too? Mine do when they get to be that color. ;)

Krista said...

I always was jealous of your Reilmann toes... :)
Love you sister! Put those old lady hose back on! (BTW, I'm super glad I have those now that I'm teaching... I can tell a big difference at the end of the day if I don't wear them)

Texan Mama @ Who Put Me In Charge said...

Hi Rachel. Found you through SITS. I'm curious, how long have you had this diability? I'm so sorry to hear that you have to deal with it all but I'm happy to hear that you are trusting in the Lord and He has given you the wisdom to be optimistic about it.

Have a great day!

Lora said...

I found you at SITS and just wanted to say hello

Thank you for sharing so eloquently your struggle. You are incredibly strong!

Rachel said...

Texan Mama,
I've had this for most of my life. I was able to get by and have a fairly normal life for a while. Then in 2004 my dysautonomia became much more disabling.

Jessica said...

God bless you in your daily battles.

Life with Kaishon said...

I can't even imagine.

gringationcancun said...

It's great that you're so open. You seem like a very strong girl!

You also have some of the prettiest feet I've ever seen.

Miss Dot said...

Wow -- these pictures really help to illustrate much better than verbal descriptions. Thank you for helping me understand what you go through on a daily basis!!

Angelia Sims said...

Thank you for sharing this and your struggles that happen on the inside and sometimes outside. It's so hard when our bodies betray us.

I was diagnosed with Grave's Disease in December.

It's nothing compared to what you have but makes me appreciate people like you that live moment to moment not knowing what might happen. And overcoming every day.

God Bless you SITSter!

Unknown Mami said...

Thank you for sharing this information. I knew nothing about it. I wonder what pregnancy was like for you.

Joy said...

I had never heard of this condition before - thanks for sharing it and raising awareness.

And congrats on your SITS day!

Sarah said...

Your courage and authenticity are inspiring. God bless you!
Happy SITS day, btw. :)

gaelikaa said...

Forgive me for preaching, but as a fellow believer, I'm going to take advantage of that for a second. Thing is, you have a right to be healed. You follow Jesus. It's not His Will for any of us to be unwell. Activate your faith, get some healing scriptures from the word, apply them daily, and see the difference. God wants you well, sister.

You are a wonderful human being. God bless you!

Skooks said...

This condition is new to me. Thank you for being honest about it and spreading some info around to help others understand what it means to have this condition.

Louise said...

Good grief! You are amazing! How do you manage to raise two little ones with all that stacked against you? Now I'm going to stop complaining about being tired, having a spot of backache and too much ironing to do. And every time a complaint comes to the tip of my tongue, I'm going to think 'Rachel', and get on with it! Have a very happy SITS day! From Louise in Italy.

Denise said...

I had never heard of this condition before. Thank you for educating us on the condition.

Karen, author of "My Funny Dad, Harry" said...

My, it's amazing that you can do as much as you do with all those problems going on inside you. You have a great attitude though which I'm sure helps a lot! Life is short but eternity is forever--hang in there!

Congrats on your SITS day!

Mom of the Twinkies and Tot! said...

Can't even imagine caring for two children with this disability...blogging must be a great way to try to forget it for about one minute flat!

Elizabeth a.k.a. Type A Mommy said...

Wow. How can you do all that you do??? I'm going to have to stop complaining, because if you can do all this while having a chronic disease, I need to get over my petty complaining! Thank you for sharing about this, I'd never heard of POTS before. Congratulations again on your SITS day!

gamommy2two said...

Thank you for sharing this with us. I had never heard of Dysautonomia before, so you've definitely enlightened me.

Judy said...

I have never heard of this. You are so generous to share this with us. Was it difficult to diagnose and when was it discovered?

Melissa @ Cellulite Investigation said...

Thanks for sharing your experience with us, Rachel. Those toenails ARE pretty!

Michelle L. said...

I came from SITS and I am glad you gave us an explanation of your disease, is it called that? Anyway, you are an inspiration to me. I just don't know how you carry out your parenting duties while handling this disease. I can't wait to read more. Thanks for being so honest and open. I have learned much.

Missy said...

Thank you for sharing with us - I'll bet you have a wonderfully supportive family. Have you had POTS your whole life?

Cyndi said...

I'm so glad I visited your blog, Rachel. I hadn't heard of your condition before and you explained it really, really well. You are an amazing mommy to be raising two (very cute) kids while dealing with major issues. Kudos!

Hoity Toity Baby said...

Oh dear Rachel you are an inspiration! You are amazing!

JDaniel4's Mom said...

Youy do so well!

Mommie Daze (Colleen) said...

Thank you for sharing your story. You are trully and inspiration to me and other moms.

Alexis Mullino said...

This is a shame. More power to you for doing all that you do for your kids and family with this trouble. That's a real inspiration. (From SITS)

Katherine said...

Your kids are very lucky to have a mommy with so much strength and integrity to guide them through life!

Keep on fighting the good fight :P

Stacy (the Random Cool Chick) said...

I love that you don't let your chronic illness slow you down - you truly are an inspiration!

Happy SITS Day! :)

Anita said...

Hi Rachel, I went to your website before reading the blog, so I saw your pictures there too. What a determined and faith filled woman you are. I admire your attitude!
Hope you are enjoying your SITS day.

Michelle said...

Wow! What a testimony you have. Thank you for sharing.

Randa @ The Bewitchin' Kitchen said...

I have never heard of your illness, thank you for sharing.

Joanie M said...

Thank you for explaining your condition. You have a very positive attitude and a wonderful family.

Popped in from SITS!!

Marie said...

Wow, everything most of us take for granted is a conscious battle for you....How long have you had this?

LizAnn said...

Hi Rachel,
Hello again from SITS
You are an inspiration to us all. I am a better person to have met you. I'm now one of your blog followers and I look forward to reading your posts.
LizAnn
www.forgirlsanddolls.com

mom2kmjx2 said...

I'm sorry you have to deal with this. It looks very painful. I deal with chronic back and ankle pain. How was it when you were pregnant?

Jen said...

The strength you must have inside you is amazing. I admire your ability to talk about what is going on, to educate others, even though it is probable that they will never truly understand. This post is wonderful. Thank you for teaching me something new.

Cara and Jenn said...

Bravo to you for keeping it together everyday. You are a hero to your children!

Cara and Jenn said...

oh and stopping by from SITS! lol
Cara

Young Wife said...

Stopping by from SITS. My husband has Psoriatic Arthritis, another invivisble illness. It is so hard some times, living with a chronic illness. Thanks for sharing your story!

LisaDay said...

That's dreadful. It might make an interesting web feature to let others know about such a horrible disease.

Happy SITS day.

LisaDay

Lacie @ Creative Attempts said...

I think you are a total inspiration and I love that you are bold enough to share your true self and let everyone see what true strength looks like

2busy said...

I have never heard of this! Wow! I am impressed by your positive attitude despite the adversity.

BTW, pretty toes...

Shana said...

Thank you for sharing this. I'd never heard of dysautonomia before. That you can still get up and put on makeup and smile is an inspiration.

Jessica said...

I've never heard of this before, but thank you for giving us so much insight on it! I'm sure it takes courage, but I completely respect the importance of awareness. Bravo to you for everything you do!

Tsquared417 said...

That has to be so hard!! I love it that you have a toe ring. :)

Renee Weatherford said...

Wow - I have never heard of this. I have foot & circulation issues too. They get very purple & sore if the temp drops just a little bit. Thank you for sharing your story with us! What a testament to your children even to get up everyday!

Zeemaid said...

I knew I had been by your page before, this post confirms it.

I love that you try to keep your spirits up by painting your toes and sporting a ring. I also love your faith in God. Thanks for sharing and giving us all a visual so we can better understand.

Happy FB sits day!

Kristen said...

Wow! I don't know how you do it. . .it is a testament to your FAITH for sure!! Some days I can barely handle life and my two kiddos and my body functions "normally". You are an inspiration!!!

lorchick @ ON{thelaundry}LINE said...

wow, great job that you still get up and get 'er done, and raise two kids toboot! I'm super impressed, and a little embarassed that I don't get more done in a day with my full health.

Heather said...

It really is true that you don't know what you have until it's gone. I never realized that I took for granted simply being able to STAND. As I go through my day I will certainly try to remember to be thankful for the little things.

Visiting from SITS.

Joann Mannix said...

I've been having a tough day, (We have a newly discovered leak under our house. My daughter's having a little trouble with grades...) And then I look around and see people like you, who are dealing with real problems, problems they bravely face every day.

God Bless you. You are an inspiration most certainly to your family and to others. Thank you for showing us a little glimpse into what your world is like. You are in my prayers.

Tonya said...

Wow! I would have never known any of this if I hadn't came across your blog. You are an inspiration!

Queen Mother said...

Thank you for the smack in the face I needed. I will be reminded of you whenever I am tempted to start complaining of being too tired or too stressed. God bless.

Christian Mommy Writer said...

Thanks for sharing with us about your illness. You are very courageous for sharing this with the world so that we can come to know and understand more about this little known disorder.

It really makes me look things a lot differently. Thanks for that burst of inspiration today!

Melanie said...

What a challenge. I am trying to imagine my day when I can only do things in 5-10 minute bursts. I bet it has to make you pretty creative.

TheEclecticElement said...

Rachel,

Congratulations on your SITS day! That's probably so exciting for you :D

I was very surprised to see that you also suffer from a chronic illness, and an autonomic nervous one at that! I have Lyme Disease and it hit me in my autonomic nervous system so I have issues walking at times-I call it sporadic paralysis because there really isn't any other way to explain it.

I was also diagnosed with POTS, so I definitely understand that situation >.<

Your not alone with your 'invisible' illness like so many have refereed to it before. Of course I don't know exactly what your going through, I can appreciate your situation!

Love and Energies to you.
Kayla

Simply Me said...

Id never have known abt this if i hadnt visited ur blog today ..i think you are truly an inspiration to all around you.. God Bless you !!

MarcomMom said...

Heavens! My hat is off to you being a mom and dealing with this with such grace. I learned a lot today.

Annie @ astonesthrowfrominsanity said...

Wow! I learned a lot. Thanks for the quick lesson. You are amazing!!

Kim @ seven thirty three said...

I learned a lot from browsig your blog and site. You are an amazing woman and I can see that you have a very loving, supportive family. Keep on keeping on!

Happy SITS day.

Jodi Widhalm said...

I've never heard of this illness before. It looks and sounds incredibly aweful. You have such a wonderful attitude! God DOES have a plan! Jer 29:11

Lisa @ This Mommy Works said...

I just love that your toenails are always painted because it makes you happy :-) I am the same way... it is truly the little things in life, sometimes.

tattytiara said...

That really was very informative. Good example of a picture being worth a thousand words!

Miz Dinah said...

Wow, never heard of the condition but now I have. Sounds like you have a pretty healthy outlook on life. Good on ya!

Kekibird said...

Wow, a strong mama! And with beautiful feet.

PJ said...

I'll tell you what, I will never complain about my feet swelling again. My legs and feet swell constantly because the major veins that carry blood from my feet to my heart are collapsed, but the veins that carry it from my heart to my feet are fine. It is painful at times, but I assure you, I feel blessed after reading your blog. God Bless you!

Love & Prayers,

PJ

PJ said...

I'll tell you what, I will never complain about my feet swelling again. My legs and feet swell constantly because the major veins that carry blood from my feet to my heart are collapsed, but the veins that carry it from my heart to my feet are fine. It is painful at times, but I assure you, I feel blessed after reading your blog. God Bless you!

Love & Prayers,

PJ

Traci said...

You know, I missed your SITS day (rough week) and just stopped by because of SITS Saturday Sharefest (you were listed above me) but I think that it was meant for me to find you. I am in my 2nd year of diagnosis of... something. They have mentioned POTS as a possibility but they are not sure yet. While I am not suffering near to the extent of you, I feel there is much I can learn from you. I will definitely be checking out your other blog. I, too, am trying to keep a rosy attitude but, you inspire me. So happy Saturday Sharefest. I feel so blessed that you posted a moment before I did.
:-)

Mrs4444 said...

Wow. I can't imagine what that must be like. I'll say a prayer for you and your family today :)

(visiting from Karen Z's blog, BTW)

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