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Disclaimer: Let me begin by saying that I am not a doctor.  I am not recommending medical advice here, only telling my personal story.  If you have a similar story, please seek professional advice. 

 

Now…..My diagnostic journey reads more like a “Lord of the Rings” trilogy (thanks Dear for that analogy!).  

 

Part One

Step back in time with me for a moment: It is 2006 and my precious baby girl has arrived. I call her “Goose”.  I considered myself a fairly healthy person.  But, when she was 6 months old, I started having some very odd symptoms–extreme fatigue (worse than just sleep-deprived infant Mama), constantly cold, dry skin, cramping/aching muscles, and trouble losing those last 15 pounds of baby weight.  

 

I had no clue what was going on so I went to my Dr. A simple blood test revealed that I had hypothyroidism (you can learn more about that here). Basically, your thyroid produces hormones that affect everything from metabolism, body temperature, breathing and heart rate to your nervous system, muscle strength, and cholesterol levels (endocrineweb.com)

 

I was prescribed a hormone replacement.  It took several adjustments and many months to get back to feeling somewhat normal.  It was something I was just going to have to live with but as long as I was taking my medicine, all was pretty normal.  

 

Part Two

Ah…time jump to 2015 when my little man was born. I call him “Bud”. When he was 2 ½, I finally decided it was time to try to lose the baby toddler weight.  I found a nutrition plan that seemed worth trying. 

 

One aspect of this new plan was to cut salt.  After 3 days of no added salt, I felt terrible. I added the salt back in and followed the plan for about 3 months.  During that time, I dropped 20 pounds (YAY!).  But…

 

I also started having some odd symptoms:

I had trouble breathing–like I couldn’t get a deep breath.

I had chest pains and heart palpitations.

My blood pressure was fluctuating drastically.

I felt extremely lightheaded and dizzy every time I stood up–like a massive head rush

My anxiety was through the roof–which gave me chest pains and made it hard to breath (vicious cycle there).

I was extremely irritable.

I had severe fatigue.

 

Now, I’m not sure if you’ve gone through the terrible 2s stage with a child, but Bud was right in the middle of a rough patch. And, he was having health issues all of his own (anyone else have to have their child’s tonsils removed?). My Goose was reaching a developmental milestone all of her own (11 going on 21). Did I mention I was extremely irritable?  I had to do something.

 

I first went to a Doc-in-the-Box because my blood pressure was so out of whack and breathing was getting more difficult.  I have a family history of heart problems, so I was scared. 

They could not draw my blood because of low blood volume.  I had never had this issue before.  I am perfectly fine with needles, but I almost passed out the 5th time they tried to stick me. I left with no answers and orders to call my Dr. the next week.  

 

My Dr. did blood work and said that I had low Vitamin D.  I was told to take supplements and see if that would help.  I tried that for about a month with no change in any symptoms.  

 

I decided to take more action.  I went to an ENT thinking vertigo or an inner ear issue may be a possibility.  The nurse practitioner told me my symptoms sounded a lot like what her daughter had experienced.  She mentioned dysautonomia and told me about the specialist her daughter went to. I did not have any ear, nose, or throat problems.  

 

Next, I was sent to a heart doctor just to be on the safe side. I had several tests done including an echocardiogram. The last test was the Tilt Table Test. From that I was finally diagnosed with dysautonomia with orthostatic hypotension.  (Click on the links to learn more)  Short story: my blood pressure can drop suddenly, especially after standing up.  Dysautonomia is an umbrella term for many autonomic nervous system disorders.   It is not rare, but it can take years from people to get a diagnosis because the symptoms can be confused with so many other problems. 

 

AHA! After 6 months and so many appointments (and copays), I had a diagnosis!  Now what?

My heart Dr. told me to drink a lot of Gatorade and eat a lot of salt.  😐

 

Part Three

I followed that “advice” for a while.  It helped somewhat, but I still wasn’t feeling “good”.  I called the specialist that my ENT recommended and finally got the help I needed.  She was awesome!  She prescribed some medications that had me feeling “OK” after a few months.  There was still something that was lacking.  I thought now would be the time to fix my diet.  I called the nutritionist.  

 

I cut inflammatory foods and began taking some supplements. And I started chiropractic care.  Finally, after a year, I could finally say I felt “good”.    

 

It has been a bumpy ride. This is something I am learning to live with, a chronic illness that will not go away.  I fluctuate between feeling OK and feeling terrible.  Because of the Pandemic, I had to change some things.  My diet suffered and I stopped going to the chiropractor.  Stress and anxiety, and the summer heat and humidity in the south, made my symptoms so much worse.  I was having such a difficult period during the summer of 2020 that I had to take medical leave from my teaching job for the first 9 weeks of school.  

 

There are so many people that have much worse symptoms and attacks from this disorder.  However, hear me out: if someone has an illness or disorder that prevents them from leading their “normal” life, then it is theirs to claim and ask for support and empathy.  It frustrates me to see people in support groups who compare their symptoms and try to downplay someone else’s issues.  If I ask a question seeking guidance on a topic, I really don’t want to hear someone say “Aw. That’s not bad. You’re lucky. Mine is blah blah blah”.  

 

So, if someone is struggling with a health problem, keep that in mind. Be supportive or steer them in another direction.  The struggles are real regardless of how they compare to someone else’s.  (Stepping down from soap box). 

 

If you’ve stayed this long, thanks for listening to my story.  If you are having similar symptoms, seek out professional help.  

 

If you have questions for me, join me on FaceBook!  Or you can email me.  

Living with a Chronic Illness and searching a diagnosis

5 Comments

  1. Taylor

    Thanks for sharing your story! And great advice on not downplaying other peoples issues, so true.

    Reply
    • Lifebetweenthedishes

      Thanks! I’m glad you agree 🙂

      Reply
  2. Casey the College Celiac

    Thank you for sharing your story!! I’m so glad you finally got some answers, even if – like many chronic illnesses – there is no “solution” to your diagnosis. Sending lots of good days and healthy vibes your way, from one spoonie to another.

    Reply
    • Lifebetweenthedishes

      Thanks! I appreciate all the good vides I can get and send them back you way 🙂

      Reply
  3. Erika Ravnsborg

    Wow! It’s so hard to deal with a Chronic Illness. My wonderful mother has one and it is so hard for her to deal with.

    Reply

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