My New Medical Saga

Posted by on Jun 6, 2016 in About me, My heart journey | 44 comments

In March this year I had my one year checkup for my heart surgery. I was so looking forward to getting the stamp of approval from my cardiologist (I still have a  hard time saying that) and moving on from the drama of the medical world. That week I had many expensive tests which were all evaluated and sent to my doctor’s office. Then it was my turn to head in there and get the results.

I am in the office, in my little assigned room waiting. The PA comes in, her name is Kim and she is brilliant. She starts out telling me how great my heart looks, how it could not be better and YAY! Then a cloud comes over her face. I have some bad news, she says, sit down.

My knees go weak. I sit.

You have a progressive lung disease.

A what? I say. A what?

It showed up on the CT scan. You have to get it checked out. Her eyes are filling up. This is bad.

I actually fell to my knees. I cried. She put her arms around me and led me out to the front room to get copies of what I needed to move forward. The entire office of workers was looking at me with sad eyes. I am back in hell, I thought. And I had never heard of lung disease, it was as unfamiliar to me as aortic aneurysms. Two smokers diseases for a non-smoker. I had a huge pity party and then started making appointments.

Fast forward. I have spent now three months, one surgery, hundreds of tests and many hours in National Jewish Health, the best respiratory hospital in the country which happens to be in Denver. It has taken over my life, in the same way the heart thing did, only slower in its scariness. After I was sent to the “rare lung disease” department it was decided that I would do a powerful and poisonous set of drugs for two months to see if it would eradicate the hazy grey areas in my left lung that everyone is worried about. I did my research and decided to say yes to this course because though the side effect were brutal, the results were often just short of miraculous. I could imagine this disease being gone.

For two months  I took high doses of Prednisone. My glucose tripled and I was diagnosed with diabetes and was given more drugs for that. My eyesight went to totally blurriness and I had an emergency ophthalmologist intervention because of that. I had intestinal distress every single day and gained 20 pounds anyway. My whole body and face swelled up. I felt crazy in the head and could not drive because of my eyes. Anxiety set in and I was given more drugs for that, but did not take them because I already felt so poisoned. I was miserable, totally miserable. My day consisted of what I could see at about 10″ away, so I took up knitting. I could not work or do much of anything.

This entire journey I kept mostly to myself and my close friends. After last year with the heart surgery I was not ready to share again, I paid such a price both professionally and personally. There was a huge outpouring of love also, which was profound and grand, but it scared me to offer my story up and be punished by cancellations and judgements, so I did not. I am now past caring what anyone thinks.

Last week I had the “results” appointment. Went in to the hospital with my loving son, and had a long series of CT scans. We waited and then went into the Rare Lung Disease swinging doors, which will never seem normal to me, and saw the doctor. It was not good news. The prednisone did not work and there was “a significant increase in disease burden”. So, after nine weeks of hell, I was way worse off than I was before.

What I know know is that it is once again a genetic short straw, and that no one quite knows what to do. The best guess is that the heart surgery exacerbated the condition (the intubation gone wrong) and started this surge. I am to go back in three months for more testing.

I am halting all the medications to see if I can actually feel remotely normal again and I am going to Brazil to see my daughter. I have four classes to teach this summer and I am going to do that with all my heart and soul.

15 months of medical hell and very dramatic diagnosis is hard on a person. I am not the same as I was before this. Hopefully I will get back to my physical self feeling better and hopefully there will be a way forward that makes sense.

Here is the good news. I joined a choir and performed on stage for the first time in my life. My friend Melinda picked me up and drove me every week. It was a blast, and something I have up till now not had the bravado to do. I also started playing tennis, which is in the morning and that is my only “good” time. I am a better player than I imagined being, despite being drugged, blurry and sick. I pushed myself and had a great time. I am a much better knitter than I used to be and I have fewer “true” friends than I used to (this kind of year drives away the weak ones) but they are dearer to me than I ever knew. My mother has been my greatest support and who can complain about that?

I have no significant symptoms. Until I do I am going ahead as usual. Have applied for some teaching next summer and like I said, will be teaching for Art Unraveled in Phoenix the first week in August and am super jazzed about my classes, and the week before that I will be teaching “An Intimate Atlas’ in New Mexico at Artifacts Gallery in Farmington.

So I ask you to share a vision with me, that my lungs decided to be “happy” and stay that way. That I begin to heal and thrive. Since the experts have no answers, I figure I can decide on my own and head toward that vision. I ask you to make no judgments on me or others that are ill, because some of us just have the experience of expressing the weaknesses of our ancestors. It is a crap shoot, not a design by God. My God does not want this for me.

The best to all of you. I am taking a break to go and see my girl in Brazil. We intend to make the mighty most of it and I will not let my head even enter the fear place, it will be dreamlike and beachy. When I get back I intend to truly get back to my place in the art world and celebrate my new book, which will be  out July 15.

Thank you for sharing this journey with me.

44 Comments

  1. So sorry about what you are going through, Jill. Still praying for you. Hope you have a wonderful visit with your daughter in Brazil

  2. Oh,s***. That’s my initial response and if I wait a day to reply, my response will be exactly the same. Please just know that I will send whatever spirits and messages that I can to try to help get you through this. Enjoy your trip to Brazil, do as much as you feel you can do, teach your classes, indulge yourself, cry when you need, laugh when you can and take pride in that new book that is coming out! Many hugs!

  3. I’m sorry to read this. You are a strong and talented woman who deserves to enjoy life without any limitations! Know that all that follow you and are inspired by you are pulling for you! xo

  4. Jill, my heart is with you. This is terrifying and I am so sorry that you are having to deal with all of this. I applaud your decisions all along the way, and love that you are moving back to yourself and strong engagement in every moment of life. I hope that Brazil is fabulous for you, and am inspired by all your upcoming plans. Much love and support from this little corner. ❤️

  5. Much love and hugs…keeping your positive vision moving forward is a great way to fight it.

  6. Dear Jill,
    Before I could finish reading your post I had to leave the computer for a bit. While I was gone I was thinking “what if you live your life as though your lungs are fine and your body believes it”? When I returned I read your vision and it is one that I share with you. Sending Love and Light!
    Hugs,
    Kim

    BTW July 15 is a very good day, My father’s birthday

  7. Thank you for sharing your story. Heart and lung disease makes me sad. My family has been full of both. I applaud you for taking a stand and enjoy life. Spending time with family and doing the things you love are what’s important. And I believe attitude has much to do with quality of life. And remember this, that despite all the crap you’ve been through you are a better person because of it. You have grown and expanded your life experiences. So enjoy your life, your family, your art. Explore, create, and expand your horizons. And to those “friends” who couldn’t handle the sad and difficult aspects of your life, well they just weren’t true friends. Hugs to you and enjoy your trip to Brazil. Fill your heart with your daughters love.

  8. Brazil sounds glorious! As do your classes and singing and tennis and your knitting skills. I have a very strong view of your happy lungs, and will keep sending energy toward that, as are your dear friend and loving family. Damn right carpe diem. You got this.

    • Should say “your dear friends” lol I know you have a bunch.

  9. Thanks for sharing your story, Jill. I am sorry to hear you have had more medical issues to deal with but I so admire your strength and courage in facing them head on and choosing to live every day in a way that you can enjoy as much as possible. Happy to be one of the ones holding this vision of wellness for you. I am sure you will have an amazing time with your daughter in Brazil!!

  10. Prayers and wishes for you to immerse in your trip.

  11. you CAN do this. you made it thru with all the heart issues, i just know you will get thru this all too. i admire you and your bravery so much. i hold you in my heart and my prayers every single day.

  12. Give ’em hell Jill….. give ’em hell.

  13. I will be thinking of you and sending lots of light, love, strength, and sweet, sweet air.

  14. Thank you for sharing. I cannot even begin to imagine what you are going through. I will continue to pray for you and your healing, because God does know your journey and cares for you unconditionally. Many hugs to you.

  15. Sending prayers and love for peace and strength, Jill. Ever onward – always forward, Have a blast in Brazil!!

  16. Brazil ! Your girl! That can only be a healing time for you and your family. I am sending love and light and focusing you your “happy lung”, happy times, healthy you and the joy your art brings to so many people.

  17. Jill, it takes bravery to tell your story. Thank you for that. I am praying for Gods healing and loving arms encircle you. Breath deeply, breath in the healing and loving surrounding you. Bless you in your making, Janie

  18. When it gets too big, it’s time to give it all over to your God ~ keep yourself in that beachy frame of mind, and reclaim your life ~ live, laugh, love!!!! Onward!!!!! 🙂

  19. I’m so sorry you have been through all of this. Thank you for sharing your story with everyone. We’ll be thinking of you, praying for you and hoping that your lungs decide to get happy quickly and allow you to do all you want again. I love your approach to moving forward, especially the part about not caring what anyone thinks. (I have a chronic disease. People think they can judge what I’m able to do all the time. I can’t stand that. Nothing makes me madder faster.) Please take care. Enjoy your family and your classes!

  20. I am not a person who really ever uses cuss words but this post makes me want to curse! CRAP! That really sucks big time!!!

    Prednisone is an awful medication that can have good results. So sad that it, mixed with all the other drugs didn’t do what they were suppose to do!!! This is one of those moments when I wish I was a magician who could wave a magic wand and make it all go away for you.

    I love your new attitude and that you are pushing forward. Onward and Upward! I know it can be very difficult to look at the positive when things don’t look so good, and I just want to pat you on the back and tell you “good job.” I look forward to seeing all the beauty you will create after your wonderful visit with your daughter in Brazil. I’m sure you will be greatly inspired! ((((hugs))))

  21. This is one of those times when I feel at a loss for words and I tend to just do what I can . . . but you’re so far away. I feel such outrage and I’m not sure where it all comes from, well, perhaps I do but this isn’t the place for it. I wish you truckloads of hope Jill, huge containers of courgae to augment the tonnes you already possess and love overflowing. If I were there I’d come around and chop your veggies. 🙂

  22. This is good news and hard news. Those of us who have incurable diseases know that the news is always mixed and never seems fair. The road is hard, but the views can be spectacular. I’ll walk with you (virtually) and envision clean lungs and a strong heart for you.

  23. Jill, I am sending all good thoughts and prayers your way. Believing you can conquer this is just as important as all the medical work being done for you. My three cancers taught me a lot. As you have found out, 1. many friends will abandon you, 2. doctors don’t know everything, 3. life isn’t fair in any way, and 4. people will judge you. All of these are sobering facts to realize. You are blessed to be at the point that you no longer care what anyone thinks. I wish you all good things and am eager to sign up for more classes with you, my dear teacher.

  24. Sending love and light. You are amazing…..
    OXOXOX

  25. Jill…I so love being invited to share your vision…It is grand and perfect…I too have a similar vision…it is how we live with the unthinkable and devastating…bravado to you my friend….you are a real live warrior who chooses to live life to it’s fullest regardless of what is dished out…play well….

  26. Dear, dear, Jill,

    Thank you for sharing so clearly what your health issues are. I will be thinking about you, hoping that you find all the good ways to put one foot in front of the other, and to find comfort with your family and friends.

    Hope you find the path you need to get you through whatever lies ahead.
    Your burden is great. I wish you continued good care and plenty of laughter and hugs each day.

  27. Beautiful Jill, my heart broke when reading this. I cry for you, but I also praise your spirit, your willpower and your joy of LIFE. You are a gorgeous person, inside and out, and have inspired me so much.

    I used the beautiful handmade book you sent me for my first gallery opening as the guest book. You were there with me in one of my most special days in the past years, and I want to be there for you, even though I am far away. Only distant in miles. Sending you so much love and admiration, Juliette

  28. Just testing to see if this comment goes through.

  29. So sorry to hear your news, Jill, but congratulations for deciding to embark on some new adventures anyway. All my best wishes for a swift healing.

  30. What an amazing person you are Jill! I’ve no doubt your courage and determination will see you back in good health. I am so shocked to hear your bad test results and so truly sorry for you. Thinking of you Jill, saying prayers. xx

  31. So sorry that you have to go through this. Hope you can have a fabulous time in Brazil with your daughter.

  32. Jill, I cannot believe what you have been through, it is too much for one person. And yet your writing is so very powerful, and such a gift to yourself and those you share it with. I am honored to know you and am inspired by your honesty, courage, and truth telling. I would be so happy to hold your vision for you. You have so much to do and share, and we all want to to watch you share you very bright light. Love to you.

  33. Jill – so sorry to hear the terrible time you’ve had the last few months. You didn’t deserve this. Positive thinking can sometimes bring miracles – I’m hoping for one for you. Also, getting a second and third opinion wouldn’t hurt either. Did they ever do a biopsy on your lung?

    I’m glad you are taking a break and doing something you really want to do. You need that. Enjoy Brazil!!! All the best and I’m glad you are still teaching! So glad your new book is coming out too!

    • nine biopsies, many, many more than one opinion. I will enjoy Brazil and thanks for your wishes Janet.

  34. Joining a choir & performing on stage for the first time, knitting while nauseated, taking up tennis with blurry vision; teaching your awesome workshops- that i know from personal experience you always put your whole heart into; and oh by the way, traveling to hell and back…i have so much respect and admiration for the way you are exploring your own personal geography!! You are scaling cliffs & forging raging torrents…its really hard to know what to say to express my deep sympathy for what you are going through!! I’m glad you are getting away to Brazil for a bit- since you are throwing caution to the wind these days, will you be wearing one of those butt floss bikini’s? Let’s get together & make a platitude or two when you get back! sending lots of love!!!

  35. Remember when you signed up for Aikido lessons so long ago and the transformation you experienced from learning to be strong for yourself? You’re still doing that and my heart is traveling with you.

  36. Thank you for sharing your journey.It is my prayer that you will find the map that leads to the completion of your vision of your healthy heart and clear lungs inspire of your genetics.I have a feeling that you will find the key,as it sounds like you have a great start with your attitude.You are my inspiration.God’s Richest Blessings to you as you begin this journey back to wellness. You can do it!

  37. Praying for God’s healing touch.

  38. I will pray that you have healthy and happy lungs and a healthy body. Enjoy life and know that we are all pulling for you❤️

  39. May God Bless and keep you! I can’t wait to get your book!

  40. I share the image, the vision of your lungs being happy. I hope that your time in Brazil with Sydney is (or was) lovely. My warm wishes to your lungs, your heart and you. I have always admired your spirit.

  41. Jill, you have been an inspiration to me for so long. Thank you for all you give and do. Wishing you much joy and peace, regardless of what the future brings.

  42. Jill, held you when you were a baby, met the children when they were babies, and now try to keep up with you in your light filled creative life. Just missing you and wondering, Sending love and healing prayers. Pat

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