Tag Archives: dysautonomia

My Life With Dysautonomia

I would like to welcome Lindsay (Musings of a Dysautonomiac), my guest blogger for the day. Lindsay and I met quite some time ago as my blog was just getting started. I wasn’t that familiar with dysautonomia until I began following Lindsay’s blog.  Now I will let Lindsay explain her chronic invisible illness to you all. Many illnesses come on gradually – symptoms slowly progress over time –  unable to determine when the illness started.  However, that was not my experience.  I remember the exact day, almost the exact moment I became ill. I was at an outdoor festival on May 17, 2009 here in southern California. I was a little tired, as I had just returned from a week long work trip to Washington, D.C. the previous day, but otherwise was feeling good.  Suddenly I felt very nauseous and while I waited in line to use the bathroom, I fainted on the street. I was taken to the emergency room in an ambulance.  After numerous scans revealed no internal bleeding, I was given an IV and sent home. In the days and weeks that followed, I attempted to return to work (I’m a business attorney) but was so weak and dizzy that I was afraid to walk the ten feet from my desk to the office printer.   At home I would sometimes have to crawl to the bathroom when the lightheadedness became overwhelming. I felt like I was on a rocking boat everytime I stood up.  I was referred to doctor after doctor and ended up seeing a neurologist, cardiologist, pulmonologist, ear, nose and throat, allergist, and physical therapist, none of whom had any idea what was happening. I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, but more for an inability to find anything else to explain my symptoms. It wasn’t until February of 2011 when I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS) by a second cardiologist. POTS is a form of dysautonomia, which means a dysfunction of the autonomic nervous system.  The autonomic nervous system controls all those functions you don’t have to think about – heart rate, blood pressure, digestion, respiration, perspiration and body temperature, among other things.  POTS is characterized by an excessive increase in heart rate when going from lying to standing. The vast majority of people with POTS are women of child bearing age. When humans stand up, gravity pulls blood down to the lower arms, abdomen, and legs.  Your body attempts to counteract the effects of gravity by increasing your heart rate and constricting blood vessels to promote the flow of blood back up and deliver oxygen to the heart and brain. However, in those of us with faulty autonomic nervous systems, this function does not work correctly and we have difficulty delivering blood back up to our upper body.  The body then almost enters a state of panic, the heart starts to beat excessively, and adrenaline may be produced.  The diagnostic criteria for POTS is an increase in heart rate of at least 30 beats per minute, or a heart rate of over 120bpm, within 10 minutes of standing. For those of us with POTS, it feels as if we are constantly running a marathon, every day. Although the diagnosis revolves around heart rate, it is just one of the many symptoms of POTS and the easiest to measure.  Other symptoms include:

  • fatigue
  • tachycardia
  • headaches
  • lightheadedness
  • dizziness
  • heart palpitations and chest pain
  • nausea
  • exercise intolerance
  • cognitive impairment (brain fog)
  • insomnia

Although these are among the most common symptoms, POTS patients can have a wide variety of symptoms. I tend to have a sensitivity to light, noise and vibrations. Because it is a “syndrome” and not a disease, most cases of POTS have a cause. Causes can include other illnesses (particularly autoimmune, lyme, mast cell diseases or Ehlers-Danlos Syndrome), pregnancy, vaccinations, viral infection, serious accident or deconditioning. In fact, NASA astronauts returning to Earth develop a temporary case of deconditioning POTS after being in a weightless environment for an extended period. I still do not know definitively what caused my POTS. I’m fortunate that I’m still able to work, as many people with POTS are unable to work or attend school. However, I can only work part-time, and there are not a lot of part-time positions available for attorneys. Career advancement isn’t a priority, or a likelihood, for someone with a chronic illness.  I am often frustrated by how hard I worked throughout college and law school, just to end up sick. I can’t stand for more than a few minutes at a time before becoming dizzy and lightheaded, and can even become symptomatic when sitting for prolonged periods of time. I realize now how I took the simple act of standing for granted before I became sick.  Sometimes I become envious of the people on t.v. and in magazines who are standing, confidently, and don’t look like they are about to fall over. I don’t remember what that’s like. I’m unable to participate in many of the social activities for people my age (35) – I can’t stand around for long, so things like bars, concerts and malls are a no-go.  Loud sounds, flashing lights and vibrations can cause an exaggerated adrenaline response, so I avoid movie theaters and overly crowded restaurants. I am intolerant to heat, so beach days, hiking, or other outdoor activities are often not a possibility. I feel as if I’ve become the opposite of the fun-loving, adventurous woman I used to be. Although my symptoms are not necessarily any better than when I was first diagnosed, there is a level of confidence that comes with experience. I know my limitations and plan my activities around those limitations. The fear behind every chest pain, palpitation and blackout has been replaced with the understanding that they are just a part of my situation now. No one prepares you for what it’s like to become sick, to have your life change in a single moment. I am so grateful to all of the other health bloggers, regardless of whether they have the same illness, and to Kathryn and her book Allergic to Life for teaching me how to live with a chronic illness.  It is very comforting to know that I’m not alone. Lindsay welcomes anyone with questions about POTS/Dysautonomia to reach out to her via email. Her email address is Lindsay@dysautonomiac.com.  Please also take some time to go to her blog and learn more about Lindsay and her struggles.

Book Blog Tour: Day 8

ARE YOU BORED SICK?  I was and so is Christine who writes for her blog entitled bored sick.  Christine is hosting me on Day 8 of the book blog  tour for Allergic to Life and myself.  Christine and I met about eight months ago through our blogs.  She suffers not only from dysautonomia (I talked about this on day four of my blog tour with Lindsay of musings of a dysautonomiac).  I was familiar with her condition but she also was recently diagnosed with Lyme disease.  The biotoxins from the Lyme Disease are not totally dissimilar to the biotoxins I was attacked with from my mold exposure.  I understand the difficulty getting them under control.

I will be doing a guest post for Christine’s blog.  I have included an excerpt from Allergic to Life and I will be talking about the loss of  many of the things I held dear in my life before illness.

Book Blog Tour: Day 4

I would like to thank Lindsay from musings of a dysautonomiac for hosting Allergic to Life and myself on Day 4 of our first ever book blog tour.  Today’s guest post is in the form of an interview.  I will be talking about writing, blogging, and my illness. I learned about Lindsay when she began following my blog a year ago.  What was a dysautonomiac I wanted to know. I immediately went to Lindsay’s site and this is a snippet of what I learned:

Dysautonomia is a dysfunction of the autonomic nervous system, or ANS.  The autonomic nervous system controls all those “automatic” body functions you don’t have to think about, like heart rate, blood pressure, temperature, digestion, respiration and perspiration. There are several types of dysautonomia, including postural orthostatic tachycardia syndrome (“POTS”), which I have. I may use POTS or dysautonomia to describe my condition in this blog, since POTS is a form of dysautonomia. But not everyone who has dysautonomia has POTS.

I have learned so much  about dysautonomia and POTS from following Lindsay’s blog.  Please stop by Lindsay’s blog for Day 4 of my tour and take a moment to sign up to follow her as well.  The Rafflecopter Giveaway continues and there will be a link for another chance to enter.

You also have a chance to enter by commenting on my blog today.  http://www.rafflecopter.com/rafl/display/e15d873/

Liebster Award

I was excited to see Friday that I had received the Liebster award from Rachel at doilooksick.

To accept this award, here are the rules:
• 1. You must thank the person who gave you this award – check
• 2. You must display the Liebster heart on your blog – check
• 3. You should nominate 7 other blogs – check
• 4. Each person must post 11 things about themselves – check
• 5. Answer the questions given to you by the blogger who nominated you – check
• 6. Create 11 questions for those you nominate to answer – check
• 7. Notify your nominees and provide a link back to your post. – check

doilooksick authored by Rachel is a wonderful site that I have been following for the last five months.   Her mission is to educate others on invisible illnesses.  Rachel has also added a wonderful series entitled Chronic Travel Bug.  doilooksick also just celebrated its first birthday.  I am happy to say that I have been following nearly half of its first year.

The blogs I am nominating are: 

  • The Labyrinth – Miche is educating others on her ordeal with mold and chemical sensitivities while trying to attend college.  I can’t seem to get my comment to post.  Miche – I hope you see this.
  • Living With Fibro – Calvin tells the story of a young man suffering from fibromyalgia.  Calvin has recently published a book of poetry and started The Gluten Free Chef where he bakes and sells gluten-free products.
  • Celiac and Allergy Adventures – Amanda talks about living with Celiac Disease as well as other allergies.
  • Jen’s Thoughts – As the author of a soon to be published book, I appreciate Jen’s blog topics on strategies for writers and reviews.
  • Dysautonomiac – Lindsay shares  information into her life living with dysautonomia (POTS).
  • akrummenacker – Allan also lives with fibromyalgia.  Despite the fatigue and pain that comes with fibromyalgia, Allan just had his first book published.  It is on my list of books to read very soon.
  • Mastcellactivation – Anaphylaxing discusses what life is like constantly battling anaphylaxis.  As a person who has had her share of anaphylaxis episodes, I can sympathize with her.

And now 11 things about myself (wow that is a lot of things to come up with).

  1. I love to read and am finding that I am enjoying my new Kindle more than I ever thought I would.  I used to read mostly mysteries and now I find myself becoming a more eclectic reader.
  2. I love being outdoors when the pollen and mold counts aren’t too high and going for walks.  I tried bicycling but it sends my asthma into a tizzy.
  3. I love old movies, especially Katharine Hepburn, Audrey Hepburn and Doris Day.
  4. I wet sanded the entire primered body of my 1964 Chevy Impala that my dad was restoring for me in preparation for being painted.
  5. I hated riding the bus in high school so rather than catch the bus a few blocks from my house to take me to the high school I attended, I walked the approximately 2 miles each way even in the cold and even in my short skirts and heels (we weren’t allowed to wear jeans or even pantsuits at the time).
  6. I love the fact that in less than a year I have 63 followers to my blog and have published over 200 posts.
  7. I was nominated to Who’s Who in Junior Colleges.
  8. I nailed off the entire sub-floor of a 2500 square foot house by myself.
  9. I want to be in Disneyland right now with my grandchildren but can’t because there is no place for me stay.
  10. I am finishing up the final stages of my book in preparation for submission.
  11. I enjoy crafting and sewing.  At one time in my life I had a boutique every year at Christmas where I sold my bears, dolls and other crafty things I made.

My 11 questions from doilooksick.

1. You don’t look sick. How do you look? In my mind I still look like I did thirteen years ago before I got sick.  My hair is colored, I am wearing my contacts, and I am wearing make-up.
2. What was your favorite thing that happened on valentines day this year?  My husband ate a simple dinner with no special dessert while I ate my lamb stew in preparation for my allergy treatment.
3. When you tell people about your illness or health problem, what would you like to hear in response?  How does this affect you?  I am so sorry that you have to live within such strict guidelines.  What can I do to make it easier for you to be around me (and really mean it).
4. What’s one skill you’d really love to learn? I would love to learn to tat.  As a highschooler an elderly woman my mom was caring for tried to teach me and I had no patience.
5. What’s one thing you’re wanting? A trip that is further away than a day trip where I can spend the night in a hotel, eat whatever I want, and go shopping.
6. What’s three things you’re thankful for? I am thankful for a husband that is still with me after my life became so complicated.  I am thankful for family that understands and are willing to accommodate my crazy life.  I am thankful that both my daughters have partners that do not think I am crazy  and have accepted my life since day one.
7. What has changed in your life in the past five years?  My sensitivities have improved some through treatment and I have been blessed with the addition of the last two of my three grandchildren.
8. What would you like to be different in five years? I would like to world to be more aware of chemical sensitivities and the ravages of mold exposures and I would like to be well enough to take a trip.
9. Do you have many friends or just a few close friends?  That is a good question.    I have about four friends that have hung with me through this illness and I have become close friends with a few that I have met along my way because of this illness.
10. What’s the funniest thing that’s ever happened because of your illness or health problem? There have been a few that I can think of.  The funniest one was one that I talked about here in my blog.  My daughter and I were on the side of the road trying desperately to get a garbage bag over her hair because she had just had it done and it was making me sick in car when I highway patrolman pulled over to see what the problem was.
11. What’s your dream job? Gosh, I don’t know if I have a dream job.  I have learned to love writing since working on my book and starting this blog.  I also love to sew.  I would love to have the energy and stamina to make clothes for little children who have nothing.  A friend and I once said years ago that it would be nice to make Easter dresses for little girls and give them away.  I do, however, work on quilts when the mood and energy level are just right that I donate to a children’s hospital.

My 11 questions to those I have given the award.

  1. What is your favorite childhood memory?
  2. If you could pick someone famous to support your cause, who would it be and why?
  3. How many books do you currently have on your shelf or e-reader waiting to be read?
  4. As a child, what did you want to be when you grew up?
  5. What is your favorite holiday?
  6. If you could cure one illness, what would it be?
  7. Do you like surprises?
  8. What are you most thankful for?
  9. Who is your hero?  Why?
  10. What is the last blog you have signed up to follow?
  11. What is your favorite song?


Allergictolifemybattle receives Reality Blog Award

Angela of Angchronicles (http://angchronicles.wordpress.com) has honored me with the Reality Blog Award today, November 23, 2012.  On behalf of myself and this blog, I humbly accept this award.  I have truly enjoyed the inspiration that is given at Angela’s blog.

I will work hard to live up to this award now that it has been bestowed upon me.  The rules that accompany this award are:

1) Show appreciation of the blogger who nominated you and link back to them in your post.  (I am doing this in my post today.)

2) Add the award logo to your blog (In the top of this blog post)

3) Share 7 things about yourself (Below the rules)

4) Nominate 5 – 10 or more bloggers you admire. (Listed at bottom of this post)

5) Contact your chosen bloggers to let them know. (CHECK YOUR BLOG!)
* Just finished my book “Allergic to Life:  My Battle for Survival, Courage, and Hope”
* Learning to multi-task again after my brain stopped allowing it
* Attempting to reach out to others with mold illness, chemical sensitivity or other environmental illness
* Learning to embrace my illness rather than reject it in hope of helping others and offering compassion from someone who is/has been in their shoes
* Love to read
* Crafty (love sewing and making things)
* Enjoying life more than ever before despite my limitations
Now for the moment you have all been waiting for.  I am awarding the Reality Blog Award to:
Melanie @ adaptingtoallergies (Melanie writes about caring for a son with food allergies.)
Rachel @ doilooksick (Rachel is raising awareness of invisible illnesses.)
Lisa @ runfastmama.com (Lisa writes about life as a mother, runner, and food allergy sufferer.)
Lindsay @ dysautonomiac.com (Lindsay writes about living life with POTS.)
Michellina @ the-labyrinth.com (Michellina writes about issues similar to mine – mold illness and chemical sensitivities.)
Allan @ akrummenacker (Allan writes about working on his novel while living with fibromyalgia.)
acflory @ Meeka’s Mind – acflory.wordpress.com (This follow’s the writings of alter ego Meeka.)
Anaphylaxing @ mastcellactivation.blogspot.com (This blog discusses life with a multitude of “invisible” illnesses including anaphylaxis, POTS and adrenal insufficiency.)
Andrea @ Our Health Journey – moldrecovery.blogspot.com (Andrea writes about her family’s health journey following a severe mold exposure.)
All the authors of the blogs mentioned above inspire me.  They inspire me for how they deal with their illness and sensitivities or those of someone they love.  They inspire me for their dedication to writing, something I have just begun since writing the story of my own illness and path toward healing both physically and emotionally.

Global Dysautonomia Awareness Month

I just learned that October is Global Dysautonomia Awareness month.  This is the first ever awareness month for Dysautonomia.  Dysautonomia is a malfunction of the autonomic nervous system which controls many body functions such as heart rate and blood pressure.  Postural Orthostatic Tachycardia Syndrome (POTS) is one such condition.

A fellow blogger just posted about the global awareness month on her blog “Musings of a Dysautonomiac”.  You may read her post and learn more about Dysautonomia at:  http://dysautonomiac.com/2012/10/02/global-dysautonomia-awareness/comment-page-1/#comment-74