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Portrait of a Hero - Lisa


My Hero for today is Lisa from: I'm All A Twitter About Life .  She is a women I look up to and admire.  We met over at voiceBoks , and soon became great friends... this is her story:

In February of 2009 I started to feel ill. My heart was racing with chest pain and palpitations and I constantly felt like I was going to pass out.  I initially thought I was having episodes of low blood sugar which was causing these symptoms and tried to manage them without relief. 

For months we did not know what was going on with me. My doctor automatically thought it was anxiety, despite my explanations to her that the tachycardia, shortness of breath, nausea, lightheaded, tremors and disorientation, were occurring on movement. 

I was sent to numerous specialists including Cardiologists, Gastroenterologist, Neurologists, Pulmonologist and Endocrinologist and had countless procedures and tests. 

Privately I was going through many more repercussions from this unknown disorder. My supervisor had visited me earlier in the month and stated that I couldn't use anymore sick time until the following year. In other words my job was potentially in danger because I was sick. In March 2009 I stopped working all together.  I felt alone, worthless and with no income. 

My doctors were stumped. They didn't know how to stop my symptoms; I was called names like "Zebra" and was told that it must be anxiety or depression, among other things.  

After a year and a half the Cardiologist and Neurologist both agreed that I probably had some form of Dysautonomia and Autonomic Dysfunction, however they didn't know how to treat it.  So they sent me to the University of Washington Neurology Clinic. I had to wait 4 to 5 months before I could see my new doctor. My appointment was in October 2010 and it was at that time that I was finally diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome

I am so grateful for my Neurologist and the Neurology Clinic at the University of Washington. Without them I probably would have lost all hope. Trials of medications are still on the horizon as we have yet to find the right combination to manage the multitude of symptoms. However, I feel very fortunate to have found my doctor and that he knows how to treat this condition. 

Image via Wikipedia

The Autonomic nervous system controls everything that is on automatic; heart rate, respiration, digestion, blood pressure, urination, and even your pupils! It is comprised of the parasympathetic and sympathetic nervous systems. The second is responsible for the fight-or-flight response. Lately that has been one of the symptoms that they have not been able to control. I feel like I have a tornado and a hurricane raging inside my body. 

Just standing for a few minutes will cause these symptoms to exacerbate. The heart rate increases, I get out of breath, lightheaded, palpitations, and nauseated just after the first few minutes I stand up. The brain fog, lack of focus and memory loss has been a challenge. After 30 years of nursing I no longer can remember basic things. Words just do not come as quickly as I would like them to! 

Having to depend on people to take me places has been a humbling experience. I used to take for granted all the freedoms I used to have, which are gone for now. 

I will not lose hope or give up. Now I enjoy each day the best I can. We make the best of it. My granddaughter now knows that she has to ask Grandpa to run with her or play hide and go seek. Maybe I can no longer pick them up and spin them around or dance, but I can have them on my lap and we can read or watch movies together. 
 Grace and I

 Adia, Grace and I

At times I do get frustrated with people who do not understand and have the mindset, "If you don't look sick then you must not be sick" mentality.  Having to explain to people over and over why I can't do something is frustrating. Even going to my primary doctor's office has been exasperating. I think I may scream if I hear the nurse say one more time, "Oh your heart rate is really high"! 

The sensations inside my body are at times indescribable. Trying to cope with changes that you can't control can be difficult at times. Sometimes I don't think I handle it very well. 

My husband has been my rock during all of this. I am not sure how I would be able to deal with day to day activities if I didn't have him with me. 
Rick and I two years before I got sick in Europe

On most days you can find me at home on either my bed or my couch with my laptop by my side.  I have started to make wonderful friends through Social Media.  I may not be able to get in my car and go out for a cup of coffee but I have been able to establish great friendships online. I have also met other P.O.T.S sufferers on the The Dysautonomia Connection Group on Facebook. 

Through that group I have found that I am not alone. Others have had to go through years of investigations, doctors, misdiagnosis and tests before they were finally diagnosed correctly. This condition is not well known in the medical community.  I would like to thank Becky Jane from Rise Above Your Limits for allowing me to spread the word about P.O.T.S.


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37 comments:

  1. This is an amazing story. There is a lady out there name Theresa at Too Many Heartbeats that has this also.

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  2. Wow! This is an incredible story! Lisa is the one I go to for all the techie stuff and help, and I have always thought to myself, how does she do all of this!? She's so organized and pulled together, and doing it all!;) And here she is, doing all of that, and struggling through this ailment at the same time! Unbelievable Lisa, and thank you so much Becky Jane for sharing this!

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  3. I have not heard of Lisa's disease but autoimmune does sound familiar. She has a great attitude with her husband "rock"....Thanks for telling us about her.

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  4. Karen, thanks for the info.on Too Many Heartbeats!

    LaDy, I go to her too for my techi questions. She is amazing with all she does!

    Kim, your welcome...I enjoy doing these stories!

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  5. Becky,
    I was honored to be included on your list, although I do not feel like a hero most days! Thank you so much for this opportunity to shed light on this disorder. xoxo Lisa

    Karen thank you for your comment about Theresa. I would love to read her blog. ~Lisa

    Hi Courtney aka Mommy LaDy Club! If it weren't for the fact that I need to talk about it, I wouldn't have, I have been in denial for a long time! I really appreciate your kind words and I am so grateful for VoiceBoks to have met you too!~Lisa

    Thank you so much Kim! I think the hero is my husband! Not sure what would have happened to me without him.~Lisa

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  6. Lisa is truly a remarkable woman. She is quite good at giving out Techy help too. I loved reading more about this incredibly wonderful woman! ~Hugs, MR

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  7. Lisa you are a hero to me!!! And I don't use that word lightly. I think it is great that you were abel to advocate for yourself and were finally able to get the help you needed. I think it is wonderful that you are sharing your story because there are so many Superwomen out there who take care of everyone else and then don't know what to do when they need help. I too have used you your for your technical knowledge and I also just love your presense on VoiceBoks and miss you when you are not on!! Thanks again for sharing! Becky thanks again for another great lady!!! Love to you both!!

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  8. Ms. Becky....I think you are my "portrait of a hero". Everybody you interview for your blog is amazing...but so are you!!! ;-)

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  9. Thanks for sharing your story, Lisa... it's nice to know that places like voiceBoks has allowed you to "go out with friends" even if you're not feeling up to it:)
    Kristina

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  10. I admire your attitude and courage in the face of adversity, Lisa. I hope that a suitable treatment is found soon.

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  11. Becky,
    Lisa has a wonderful story and her outlook and attitude are inspiring! Thank you for honoring her in this way!
    Blessings,
    ~Erin
    www.mynuggetsoftruth.blogspot.com

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  12. Becky you always feature such inspirational women! Lisa, thank you for sharing your story. I have struggled with an undiagnosed illness for three years now. Some days are very challenging, others not so bad. I'm thankful when I hear of women that are able to creatively and courageously face their limitations!

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  13. Thanks everyone for you great comments...I know that Lisa and I are blushing...

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  14. MR Mumsy, Thank you so much. Becky you are right, blushing here too!

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  15. Kathy you are so sweet. VoiceBoks has been a Godsend to me. I hate when I am too tired to get on there. Love you too.

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  16. Deb, You said it. Becky is my hero too! Thank you!

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  17. Hi Kristina! Yes, my virtual cup of java!

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  18. Thank you so much ape2016! I can't wait for that as well!

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  19. Hi Erin! I am so grateful to Becky too.

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  20. I am sorry to hear Beck. I pray you get relief soon. You are not alone now!

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  21. What a wonderful post Becky, and Lisa, thanks to you also for sharing this lovely story.

    Kudos to both of you for not letting illness get you down.

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  22. Prayers for you Lisa and thanks Becky Jane for sharing her story and raising awareness for P.O.T.S.

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  23. i had never heard of any of those things before

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  24. I love you very much Lisa, and Becky too. I think about you ladies all the time and I will find a way to see you both someday, I promise. What you have added to my life on line is a blessing.

    *sniff* I need a tissue

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  25. What a great inspiring story and my blessings to you Lisa. Thanks Becky for posting this and let others learn more about P.O.T.S. You learn something new everyday.
    Wishing all the best,
    Barbara
    Español para Niños (Spanish for Kids)

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  26. Wow! What a strong lady! We'll be praying. :-) Hey, TJ from www.MeasuringFlower.com popping by to say hi from VoiceBoks' Christian Moms hop. I hope you have a great weekend! :-D

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  27. Stopping in over from Voiceboks... Wow... Thanks for sharing this incredible story.... What a wonderful lady.... I've never heard of this disorder.... My heart goes out to you, friend.... Hope you guys have a great week! :) Olivia

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  28. Lisa, this story is so fascinating to me. I hadn't heard of this condition until recently when my hair dresser was diagnosed with it. So when I stumbled upon this post, I thought it was in interesting coincidence. I'm definitely looking into this a bit more, as I often have feelings of heart palpitations, nausea, headaches, and the concern of passing out. It never goes beyond that and I haven't been to a doctor to discuss it. I just assume it's a form of dehydration or my blood pressure dropping too low from my half-marathon long training runs. Anyway, it's good to be aware of this condition. Please know I'm covering you in prayer.

    Many blessings,
    Rosann
    http://www.christiansupermom.com/

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  29. Thank you Beck & Lisa for sharing about POTS. I too had never heard of it. I have email Dr.Oz to help get this more widely known. Stay strong Lisa! We are here for you! xoxox

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  30. Much thanks to you two wonderful women!!! I have sent an email to Dr.Oz as well in hopes that this diesease can get some well needed attention. Lisa, you are in my thoughts and prayers!!! Much love to the both of you!!

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  31. Thank you so much for sharing your story. I will send an email to Dr.Oz & hope he picks up the banner and spreads the word about this disease. I get occasional tachycardia, but it usually lasts less than an hour...with no other symptoms other than you can see my chest pounding and clothing moving. That is disturbing enough...I can't imagine how scary your situation must have been (and still is). It is so very frustrating to have docs put everything down to anxiety and depression...an unfortunate occurrence all too often, especially when the patient is a woman. Congratulations on your amazing attitude!!!

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  32. Lisa, I knew you had been sick sick, but had NO idea the multitude of it all. Your in my prayers sweets! I also sent an email to Dr. Oz!!!

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  33. You're an amazing woman Lisa! Truly, you're so encouraging to others all the time. I'm sorry for what you have to go through, but you handle it with such grace.

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  34. Thank you for sharing your story- you are amazing and an inspirational spirit. Keep on keeping on girl!!

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  35. Lisa, I'm so sorry you've had such a hard time getting to a diagnosis and getting help. I hope that more help comes your way very soon and that you feel well enough to live a relatively normal life. I don't have P.O.T.S. but I have my own health challenges. I want you to know that you've inspired me and given me strength. I want to some day share my story in case it helps others. I'm not ready yet... but I'm almost there.

    I'm sending you healing energy.

    ~Sue

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  36. Lisa- You are an amazing and courageous woman. This must be very hard to deal with. I commend you for getting the word out there and letting people know more about this. I am sorry for your struggles and for how people react. I hope your medication eases things. Thanks so much for sharing your story with us.

    Becky Jane- Thank you so much for featuring Lisa like this.

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