Update March 2018

It’s hard to believe that it’s been so very long since I’ve written anything here. I can only apologize as life got even crazier than last year.

After I was diagnosed with orthostatic hypotension, I did meet with an great new neurologist. Of course he’s in Panama City, but so worth the drive. After the best, most thorough neurological exam I’ve ever had, I asked if he had a thought as to what I have. Yes, he thought I might have MSA (Multiple system atrophy) which is the worst part of Autonomic Dysfunction. Of course I had never heard of either, so I did quite a bit of research, even bought the book The Dysautonomia Project.  Talk about eye opening! Dysautonomia is why I have had so many things wrong with me over the years that I have recounted in this very blog! Autonomic Dysfunction means that the the things that your body does normally, mine does not. Mine is broken and has been for years! Unfortunately they really don’t teach much at all about this in medical school. This is why I’ve gone so very many years without a diagnosis. Think about all of the things your body does without your thinking about it! Starting at the top without involving the actual brain—your eyes, blinking, tearing. Mine have been “the driest any Ophthalmologist has seen ever”   I now have to put RX drops in 4 times/day. My nose. I think I’ve already blogged about getting an aspergillosis fungus in my sphenoid sinus back in 1998. What a miracle it was that Mayo Clinic identified it and operated “just in time” to save my life. And by the way, one only gets exotic germs like this with a compromised immune system, but this was years before I understood that. I went through many more surgeries—cysts in my throat, my gallbladder, full of infection and stones, my colon and kidneys, stones and bubbles due to adhesions that I grow anywhere and everywhere. It was why I had to have a total hysterectomy at twenty-two. Adhesions had destroyed my tubes. I had cysts all over my ovaries. What a miracle it was for me to finally have a child at twenty one, thirteen months previously when I had been told I would never get pregnant or if I did, carry that child to term as I had lost three very early in the pregnancies.

Still  that is a long time ago, I’ve written about some of this before. Why is it important now?

I guess it’s important because things keep on happening in my life. Regardless of being diagnosed with allergic asthma and getting the wonder drug Xolair, I continued to have what the docs thought were regular asthma attacks. But again thank God for my cardiologist. He said all this has to be something more than just asthma! HE WAS SO VERY CORRECT! He referred us to the U of AL at Birmingham Pulmonary Critical Care Clinic. It was a great experience to be really listened to, concerns, allergies, reactions, hospitalizations, etc. They did some blood tests and a high resolution CT Scan. It turned out that I have a lung disease called Bronchiectasis which is not very good to have at all but explains my constant sickness and hospitalizations. I also have something called small air disease— not COPD. But I do trap bad air and then can’t get good air in. It explains why I get breathless so much. Between the two I need oxygen during the day a lot of the time, not just at night.

Of course this diagnosis provoked other tests. I have esophagitis too, so I had to have a barium swallow test to see if the stuff coming up from my stomach went back down again or over to my lungs. (It doesn’t) But what was great about my time there was getting to share my previous experience with a paralyzed vocal cord and the testing and not being able to speak for 18 months and how God healed me, yet my vocal chord was still paralyzed till the 7 th year, the Jubilee Year when all things are made new again. Even the Lord goes by His own laws! This was 12 years ago that I got my voice back this coming fall, yet God is still using that story!

Bronchiectasis is when your bronchial tubes stay inflamed and full of mucus that most gets infected. Really it’s a vicious cycle. So now I am doing breathing treatments three times a day regardless of how I feel and I use this new device I breathe into called an acapella which makes things vibrate and loosen up so they can be coughed up. I guess this is why it’s called non cf Bronchiectasis.. I am thankful for the miracle that one of the docs in my primary practice. He interned in a cf ward at Tulane back in the  day. He has been very helpful to my personal primary doc.

I have to do all this and try and ride my recumbent bike as I can’t just go out and take a walk ( I have a walker for the dizzy times)  it biking is probably the best for me right now. I know it’s important to still get cardio exercise.

AND the biggest blessing is my wonderful boss and partner! I’ve been able to work still when I wasn’t too dizzy or nauseous or had no voice from all the coughing. But God alone has blessed our business last year and this year. I am so thankful for my wonderful partner and as I prayed for our business this year, I saw that God could and would bless a business that would give Him all the glory! How could we not as handicapped as I’ve turned out to be? But when I can work, He gives me the words, the ideas, the creativeness that sometimes we need in our business.

I written so much, but it’s been so long, I know. I hope those of you who still follow me will let me know how you are, too. Sometimes living life gets in the way of writing our heart. Lately it’s just been all I could do to live. This was my scripture from this morning’s devotional:

Isaiah 12:2-3  Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord, is my strength and my song; He has become my salvation. With joy you will draw water from the wells of salavation.

g’night,

Cindy