Friday, August 23, 2013

The Verdict Is In

 (If this is too long or TMI for you, feel free to skip to thank you messages at the bottom of the post!)
Those of you who have followed The Marmelade Gyspy for the past months know that since February -- after a long, incurable (but manageable) lung disease called bronchiectasis -- with many infections that would occur periodically -- I went for a second opinion. I was tired of feeling like a rag doll.
I had to shift my own thinking from fear that something awful was there to accepting what was indisputable -- annoying, but not life threatening -- I hoped.
I just wanted to be sure that we weren't overlooking something that might get lost, assuming it was the bronchiectasis. Maybe we'd find an underlying cause that, while it couldn't cure it, could help the infections occur less frequently. What I needed was a little good luck for once.
So, it was off to the Infectious Disease folks. I fully expected them to do their thing, take lots of tests and tell me they could find nothing more. Yay, me! But I had entered the web of modern medicine.
What they found initially was that I may have a serious lung disease -- a non-contagious tuberculosis infection with a long name. Then they said it was another. And when they told me the treatment options, I was frightened and horrified.
Two years. Vision loss. Plus the usual chemo effects. I felt like the grim reaper couldn't be far behind.
There was one appointment after another with no concrete information. "The test results aren't in." I felt like a puppet with doctors and labs pulling the strings.
They decided to test again. Perhaps it was a false positive. Maybe it was just protocol. I kept thinking positive thoughts -- and tons of prayers were thrown up to the universe.
Almost every day I wore a mask that tried to hide the fear and anxiety. "How're you doing today?" "Oh, not so bad, thanks for asking!" (Happy little smile.)
But no matter what I said to others, inside I couldn't escape from it. And pretty much everyone knew it -- even if they didn't know how deep that fear went.
I felt like I was juggling too many balls. Playing with fire. And while work, volunteering, art, being with friends, brought their own diversions, I felt like I was hiding in all of these things so I didn't have to face the inside of me. The frightened part.
Well, after six months of testing, the verdict is in.
And I'm OK. Pretty much.
I do have one of those mycobacterium infections (Mycobacterium moriokaense) but it only showed in one of many cultures and is not considered something that they feel should be treated in this way at this time.

In other words. I am free.
Free from the fear and anxiety and edginess.
Free from the tears, except those of joy.
Free from the anxiety of a treatment considered worse
than the disease.
Free to make plans and know that pending some emergency from any quarter,
I will be able to realize those plans.
Free. And happy.
The Moriokaense does have potential challenges -- chronic pneumonia as the primary susceptibility with this. But watching it is just fine. It puts me in no jeopardy. And makes a massive difference in my quality of life. And while I will still have bronchiectasis flare-ups and infections, it DOES mean that I can be treated for those a LOT easier and in a MUCH shorter period of time than with something worse.
I'm sure you can imagine how relieved I am. Joy doesn't come close,

I can't begin to express how much I have valued the support, encouragement, listening ears, positive thoughts and prayers of so many people, including all of you. I have been a bundle of nerves and anxiety for a long, long time and have shed more tears in frustration than I like to imagine.
Rick, in particular, has been such a tremendous support -- picking me up when I'm down, listening, being there -- pure and simple. There are times when I think this has been harder for him than for me.

I have received cards and good wishes and so much more from so many of you -- and many of us have never met face-to-face. And I know every single bit of that energy has helped.

I'm feeling better physically this summer than I had in a number of months and now I feel like a huge weight is off my shoulders and that "vice" that was holding my head in a continually anxious state has been released.
Retirement is on Friday, September 13 -- and since I'm taking a little time off before, that means about ten working days left. (But who's counting? Oh, me!) That means I can stop worrying about travel or some of the other things that were on my mind and relax into it.
I am so very grateful in so many ways.
Thank you, all.

I am humbled by your support and treasure it more than you know.


Jeanie said...

I love the way you have illustrated such a scary journey. I will just say a big WOO HOO! for you and look forward to hearing about the plans you are making.

Vagabonde said...

Such great news Jeanie! Let’s party! I know your heart sings and ours too – you have been under dark clouds for so long, it is nice to see the sun shining on you now. I also love your selection of photos – they illustrate you points so well.

You are retiring on Friday the 13th? I always thought it a lucky day because a long time ago I bought a lottery ticket in France on such a day and won – it was only $50 but in those days it was a lot more than my allowance. I am so happy for you and your family and friends – everything is all right.

anno said...

Loved this post, Jeanie. Loved the good news, loved the illustrations you picked, loved the humor and lightness of spirit you have found. So happy to hear all of this, every bit.

Angelsdoor * Penny said...

Dear Jeanie,
There are no words to truly express my relief.. I know you will still have health challenges, but the this very dark cloud looks like it has lifted for you.
My wish for you is a happy and healthy retirement..
love and blessings,

I need orange said...


What great news!!!!!!!!!!!!!!!!!

I can only imagine the euphoria. Hooray!!!!!!!!!!!!!!!!!!!!

So glad you pursued a second opinion. Scary, but what a good result!!!!!!!

Looking forward to coffee after your (imminent!!!) retirement!

Zingerman's? Followed up by a stroll through Hollander's?


~*~Patty S said...

Oh such wonderful news dear Jeanie
what a relief and that is putting it mildly!!!
Doing the happy dance for your new lease on life...
Enjoy ♥ Enjoy
what a difference a day can make...a moment even
(((hugs))) and continued Blessings to you and yours

Sally Wessely said...

Jeanie, this post was brilliantly illustrated. You captured what so many of us have felt and experienced as we have gone through our medical trials, tribulations, anxieties, and fears. You put words and pictures to what I experienced in what I call "testing hell." You said it better by calling your experience the "web of modern medicine." Thank you for sharing your experience. In many ways, it makes me feel so much less alone.

The good news is just that: good news. No, it is so much more than that. It is: awesome news! Now, I feel like I should stand up and shout and clap my hands. YEA Jeanie!

Mae Travels said...

Just the right amount of information, Jeanie (not TMI). And what great information! Hooooray!!!!!

love and hope for continued good news... mae

Cheryl Rice said...

Good news for a great friend! So happy and relieved for you! May you have many happy journeys & experiences in your retirement (and lots of fun Cork Popper gatherings as well!)

Mary M-S said...

Jeanie, as others have noted, this was exceptionally well "illustrated" with your photos. Such a joy to read your good news as you launch your next life chapter. If there's a party before you leave, make sure I know about it, please!!

Jan Hermann said...

I had noooooooo idea - being a newbie to your blog. Glad you're better than you thought {PTL!} and you're able to be treated without all the bad side affects. Happy Retirement!!

Becca said...

I am so so happy for you, that you can go into retirement with this good news!

Rosa said...

Oh honeeey! I am so happy for you. Happy you can now release the fear of not knowing, enjoy your life with a special-renewed energy and especially feel the love always coming your way. Big ol' bear hugs to you! <3

Joanne Huffman said...

Good news beautifully conveyed to the many people who care a lot about you.

beth said...

oh jeanie....i am SO happy for you and can only imagine how you must be feeling with such great news !!!

Anonymous said...

yeah!!! great news, thanks for sharing!

Janet said...

Thank goodness for second opinions! I think this is the best news I've heard in a while. I'm so happy for you. Now you can truly enjoy your retirement and do all the things you dreamed about.

Do you see that crazy woman? That's me, dancing a jig over the good news!

Cheryl said...

Praise God! Oh I know of those deep seeded sickening feelings of total fear and despair. The courage not to go ape sh!t on people because they just rub you the wrong way when you've had enough--- oh wait, thats me LOL

Your post brought tears to my eyes... so relieved to hear that it isn't something more serious than what it is--- although I know what you've been diagnosed with is serious. Okokok... babbling, I'm just so happy for you!
big hugs,

skiourophile said...

What a relief to you *finally* to have information that can make such a positive difference to your health and your life, Jeanie. All the best for the wind-down (or up?!) to retirement.

Travel With Lulu said...

I so happy for you that you received good news. I cannot imagine living in such fear of the unknown. Congratulations on your upcoming retirement too!

Shane Pollard said...

Dearest Jeanie

you've just made my day - I'm totally "OVER THE MOON" for you dear friend!!!!!!!!!!!!!!!!!!!

This is a marvellous post - you've expressed your feelings so well Jeanie.
Feeling the weight disappear off your shoulders - that has to be the understatement of the year.

YOU are going to thrive on retirement - the world's your oyster my darling - grab it with both hands - as I know you will!

Blessings ((hugs)) and love
Shane xox

Marilyn Miller said...

This is the best news ever. I am so very, very happy for you. Now just enjoy the upcoming celebrations and retirement.

shoreacres said...

For the first time since starting to follow this journey of yours, I just laughed out loud. It occurred to me - when pneumonia is the good news, that speaks as much as anything to the depth of the hell you've been in.

But the day is almost here - retirement, travel, relaxation, joy.

Here is my one word of advice - set aside a little time post-retirement just to rest up. Despite the fact that you've been looking forward to this for ages, it's a big, stressful event, a huge change, and we need to be careful about dealing with good stress as well as bad stress!

Hugs and love - you're on your way!

Jennifer Richardson said...

I'm jumping up and down inside,
Jeanie....what fantastic, awesome,
wonderful, huge news!!!!!!!
Smiling. Just so much smiling:):):)

Linda Jo said...

I am so thrilled that you have such good news! That is awesome! I see a bunch of women dancing in a circle, each one of us joining the circle as we read your blog and come to the comments! Such a blessing! Enjoy!! You have been so blessed!

Tracy said...

Ah, Jeanie... Living with fear, and trying to smooth it over, it is hard work... it's hard on the mind, body & spirit! But WOW... what great news. I'm just sooo VERY glad that it wasn't the worst, and that you don't have these worries looming anymore. I could just cry... So GLAD for you, so relieved...Hoping the Moriokaense will treat not too bad, that it will be manageable. So glad you've been able to have some time to just be, and that now you can "recover" from this time of worry, and face the concerns of your health with real information and renewed positivity. Here's to YOU--healthy and strong. Have a BIG party to celebrate your retirement and YOU! :o) ((LOVE & BIG HUGS))

joyce said...

I've been a little missing from Blogland, but I am glad I jumped in when you were writing about good news....and I love the pictures you chose! Best of all is that you're going to be okay.

Kerry Lee said...

<3 <3 <3

Barb said...

Jeanie, These photos reflecting your words are just fabulous. Of course I'm so happy for you - even if your retirement date IS Friday the 13th! Relax and breathe - enjoy.

Lisa from Lisa's Yarns said...

Tears came to my eyes as I read this post. I am SO HAPPY for you Jeanie, and so relieved that you can put down this burden of worry that you have been carrying around for far too long. I am so glad that the future is looking brighter and you can stop into retirement with excitement and anticipation instead of fear and dread over what is to come. I am so glad that all of those prayers that have been lifted up on your behalf were answered.

Also, I love all the pictures you used to illustrated the experience you have been through.

I'm so happy for you, friend. And I would TOTALLY be counting down the days. Heck, I might even count down the hours. ;)

Shelia said...

Oh, Jeanie! I'm so happy for you and am celebrating with you. I'm so sorry for all you've gone through and can't imagine all the fear that has been in you with the wondering. God is good and hallelujah.
Be a sweetie,
shelia ;)

Relyn Lawson said...

I am very excited for your retirement. Of course, I am MUCH MORE excited about your clean(ish) bill of health. Praise the good Lord!! I am so very pleased for you. Sending you much love and many prayers for continued good health.

Annie Jeffries said...

Sliding in here late to the good news, Jeanie, but jumping up and down and cheering. Your images conveyed so much emotion with your words.

Ten days left. Ten days left. Doing a happy dance with you. I think I'm even bumping a little twerk in there. WooHoo.

Kirsten Steen said...

Wow! So very much on your plate! And now retirement to boot. What fun that will be! So many blessings amongst so much anxiety (for all of us). Thinking of you and wishing you a happy end of summer and beginning of retirement.

Mary Rose's said...

This was a wonderful summing-up of the Fears, the Waiting, and now the Joy. My heart is full of dancing rainbow-colored cats to know you're free. Much, much love to you and Rick (and La Cosette, "bien fur!")
- Maryanne in SC

Genie -- Paris and Beyond said...

What wonderful news and answer to prayers. I am delighted and will take a sigh of relief with you dear friend. You have much to live for and are full of life. Big hugs!


Anonymous said...

Figures! I read today's post before I got to this one. I am so very happy that your fears have been released and that you are free to chase the dreams you have for the future. I need to call you to tell you about how you influenced someone down here the other day. I thank God for the blessings he is bestowing on you and Rick. Love to you both. Kitty

Bella Rum said...

Oh, Jeanie, I cannot tell you how happy this post made me. I know that you still have challenges ahead, but I also know this is a huge relief to uou. You've been on my mind and in my heart. I wish you good health and a super fun retirement.

Quiltmoose - Dagmar said...

Jeanie, I am so happy for you! What a wonderful post!

((Hugs)), Dagmar

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