Doing that dance – embracing a challenge

Such a week. Subsequent to my annual chest CT scan (I get one every year due to my scleroderma), I’ve been diagnosed with a non-tuberculous mycobacteria (NTM) lung infection. It is rare, even more rare than scleroderma. But I have all the markers:

  • Tall, thin, Caucasian woman, with scoliosis and a malformed breastplate.
  • And an immune disorder.

Mycobacteria are everywhere in water and soil, and most people’s systems just shrug them off. But not mine.

  • It’s not cancer, congenital, genetic, or contagious. It is opportunistic in the right host. Like my little body.
  • What it means for me: 1 – 2 years of a treatment program, 3 antibiotics taken concurrently, oral and IV. If you are familiar with drug toxicity, you can imagine what’s ahead of me.

Yes, I have symptoms now, and I have gotten in touch with an Orlando pulmonologist for continuing care. I’m moving in 4 weeks…

Scared? yes, a bit. It’s unexpected, to say the least. Exotic ? But I have lots of family support, and I’ll just keep sewing and focusing on all the wonderful things 🙂

Coco

34 thoughts on “Doing that dance – embracing a challenge

  1. You are such a brave, courageous woman as you handle all the things going on in your life with such a great attitude. I admire your strength. Know I will continue to pray for you and appreciate how you keep us all updated on your ‘life’. Please keep sewing as I adore all your beautiful makes. Just saw your gorgeous white jacket!!! Perfection!!!! Hugs!!!! Lisa

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  2. Dear Coco, I read your blog religiously (but don’t comment) and you have inspired me in so many ways…I wanted to share this with you, with the intent to help you feel supported and feel the power of numbers. I had a chest scan last spring as part of my healthcare treatment plan, and was shocked to learn I had a lung nodule that required additional testing etc…ultimately needing a lobectomy and lymph node removal, plus several months of high-dose anti fungal treatment. I inhaled a fungus. It’s considered a rare disease, in part, I believe, because those of us infected aren’t counted. No one would have diagnosed this without a CT scan followed by a pet scan and surgical biopsy. I’m glad I was diagnosed, and glad for our health care, but I’m not glad we don’t have easier detection and better treatment options. There are now NIH observational studies just to try and count how many of us there are…maybe when we are considered “normal”, we will garner more attention and research for more effective detection and treatment. (I am feeling somewhat better, now that I have chosen to stop treatment after my initial course.)
    Sending you prayers, encouragement, and healing thoughts. I’m glad you will be closer to your family – they will so love to be near you!

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    1. You are a brave woman and so kind to share your experience. I hope you recover well, what an unusual challenge. Thinking of you – Coco

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  3. Dr. Gundry sells “probiotics” so that your system can stay more balanced while you’re receiving treatment. Just a thought. Sending support and “AmazinGRACE” healing.

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  4. My sixteen year old daughter had the same thing. Her doctors added a special B vitamin to the cocktail and her gynecologist added a probiotic to the mix. Ten years later she is disease free and healthy. I hope you won’t have a difficult time with this.

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  5. I’m your sister in arms in this diagnosis. I had a bronchoscopy last December to figure out the reason for a constant, persistent cough and a mucus culture confirmed I have MAC, the non-tuberculosis, non HIV strain of Mycobacterium Avium Complex. As you say, the bacteria that causes it is not rare but it doesn’t present in a wide spectrum of the population. My dentist says she has three current patients with it and all of us are older, thin, white women. I’ve been on the trio of drugs since December 31st and…knock on wood,…have avoided debilitating side effects
    Fatigue is the most usual problem along with upset stomach. All my drugs are oral, non IV. I have no other health issues and that’s likely a reason I am skating along so far. The drugs continue at least until next January, then we reassess.

    Stay strong, Coco. Drop me an email if you ever want to talk about it.

    Barbara

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  6. Oh good grief, thats a long time on antibotics. Hope the move goes smoothly and glad you are getting closer to the family. You are one special lady in many ways!

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  7. So sorry…I neglected to give my name on the last post…it’s from Maureen in Rhode Island. Hugs and prayers to you, dear Coco. xxx

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  8. Oh, Coco, life is so infair! I’m so sorry to learn about this newest challenge your’re facing, and will keep you in my thoughts and prayers. You’re truly a steel magnolia- I admire your strength, perseverance and positive attitude so much! You’re an amazing woman and am inspired every time I read your wonderful blog. God bless you…today and always!
    Hugs! xxx

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  9. Good gravy what a nightmare! Two of my adult children have had to have extended antibiotic courses (for complete unrelated infections that occurred at the same time, weirdly) and trying to rebalance your system is really tough. I hope it all goes well for you and there are no complications.

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  10. One more reason to hold you close across cyberspace. You will never be alone. I’ll keep thinking of you when I turn on my sewing machine and remember the lovely garments you keep modeling for us, beautiful woman. And as you make this move to a new home. Much love and care.

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  11. I’m sending positivity during your move/new treatment! All the best, and you’ll certainly be the coolest and most creatively dressed person receiving care for NTM!

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  12. Ugh! Another challenge to your optimism and determination. May your creativity continue to be a powerful medicine. Wishing you well as you undertake the necessary treatment.

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  13. I love your blog, not only for your wonderful creativity, but also for the courage and optimism in your outlook towards life. You are an inspiration to me and I check in to suck in a bit of what you have. I am not a religious person but I know I will be sending you prayers for strength as you face this new challenge. I am so glad your family will be closer to support you!

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  14. Oh Coco. I’m sorry you are having to face this latest struggle. I do know, intimately, the drug toxicity you refer to…and then trying to have your system react normally afterwards!(Pretty sure you know what I mean.) If you have to face this newest kink, I sure am glad it’s 2019, and medicine has come so far that you have the chance to do so. Hugs, thoughts & prayers are yours; use them when you need our strength to help hold you up. xxx

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  15. So sorry to hear this. You are now special in even one more way than before but how staggering to think about such a long time on antibiotics. I hope you have a smooth move and can be patient with yourself about unpacking and hanging pictures while you make yourself a priority.

    My oncologist keeps reminding me that sometimes doing nothing is doing something.

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  16. I will keep you in my thoughts and prayers. Good luck and good luck with your move. I always look forward to reading about your sewing projects.

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