Timeline, Part 2.

posted in: Sicky 28
Sweet n' lowdown.
Sweet n’ lowdown.

As the well-wishes and words of kindness came in last night/today regarding yesterday’s post, I felt subdued and grateful. I also became concerned that the sharing of my UC story thus far was potentially taking up too much air time in people’s heads, thoughts, prayers, etc. I shared the first half of the timeline with a desire to inform, possibly assist, and maybe even entertain (seriously, you can’t write this stuff.) But when the compassion came at me from all sides I suddenly felt guilty that I had directed all of this energy at myself when really, we’ve all got botched j-pouch surgeries. We’ve all got a health crisis.

We are all temporarily abled. That’s not just a politically correct catchphrase: it is one of the truest things I know. Our bodies are systems; systems fail. We are organic matter; organic matter gets infected, infested, and eventually rots away. There’s nothing to be done about it and to preface it all by saying, “Sorry to be morbid, but the funny thing about bodies is…” is to keep the yardstick in place that distances us from the reality of our rather absurd situation. It is my fondest wish that every person reading this is full of vim and vigor from their first day to their last, but it’s more likely that most of us will deal with significant health issues somewhere along the trek. Sooner, later, or now.

So hang my tale: we all need compassion. By virtue of being human, we all need loving kindness. It’s hard down here. And that’s when we’re healthy and well! Beyond that, many of us have diseases and afflictions that do not call for surgery and never will. There are those among us who are quite sick indeed but look perfectly fine. Those people need emails of encouragement, too. They need blog comments. And so it was that I felt I had gotten too much of the universe’s healing energy yesterday and today. I will send some along to the next fellow with your regards; maybe it will come back to you, as you also need it. Sooner, later, now.

With that, let’s dive down into the second half of what happened so far in my life, vis a vis being sick. When I returned to Chicago in ’09, things took a turn from awful to downright horrid.

Summer ’09 – My then-husband leaves for a year to train for the Army Reserves. A decision we made together proves disastrous. He was away, my entire world/existence was changing daily. A gulf formed that would never again be brooked.

August ’09 – I am declared well enough for the “takedown” surgery at Northwestern. The ileostomy (stoma) I had is poked back inside my belly and reconnected to the internal j-pouch. In theory, I should be able to continue my life now, albeit with a “new normal.”

September ’09 – My health rapidly deteriorates following the takedown. Turns out the leak has not healed. Waste is leaking into my abdomen from the pouch. I am hospitalized — can’t remember how many times —  over the next few months. (Silver lining: I begin to make quilts for sanity preservation.)

October ’09 – “Bio-glue” is squirted into my j-pouch in attempts to “plug up” the leak. Bio-glue is what they use to glue heart muscles back together after surgery, apparently? While the glue does its thing, I am told “No food allowed.” A PICC line (my third; a mega-IV that is inserted via ultrasound into your arm and travels through a major artery to dump medicine/food directly into your vena cava) is placed and I am put on total parenteral nutrition (a.k.a., TPN, a.k.a., “feeding tube”.) Twice a day, I hook up a gallon bag of white fluid into a port in my arm and sit still while it is pumped in. I have several IR drains, as well. I am a ghost among men.

November ’09 – TPN and bio glue deemed a failure. Pouch needs more time to heal after all. I will be re-diverted. (Translation: I will get another stoma.) Surgery at Northwestern. This time, I get an epidural. A psychiatrist visits me in the hospital post-surgery and recommends I go on an antidepressant. I take her up on that.

December ’09-’11 – Life continues apace. My marriage falls apart. I continue to work as a freelancer, building Quilty and doing work in the theater in Chicago to take my mind off my health issues and my broken relationship. Bag leaks in bed, painful rashes, etc., are par for the course with the second stoma as with the first but it’s a known quantity, at least. I begin to practice yoga with obsessive drive: I make deals with the universe that if I get healthy enough before the second takedown a year from now, I will make it.

June ’11 – Second takedown. Northwestern. Epidural. Things go well.

Fall ’12 – After a shaky but decent year, things begin to crack. I have a fissure. I also have a fistula. (I leave those things to you to look up. Do not image search.) Various methods are deployed to deal with these issues. I work harder than I should, afraid at any moment of hospitalization. There are several, usually related to the fistula or flora issues in my ruined guts. I make a series of self-destructive choices. I am wildly productive.

Fall ’13 – The fissure has come home to roost. I am crippled with pain. An ambulance comes to my condo to get me on the worst of the nights; they break my front door. I get into a pattern where I know when the fissure is about to do its worst; I frequently take the bus up Michigan Ave. to the ER. Hospitalizations. Pain medicine. Lying to everyone about how bad it is. Describing the pain to someone, I say it’s “like having a gunshot wound that you sh-t battery acid out of approximately twenty times a day.” (I stand by this description.)

Then, up to now – Good days, bad days. I got a pain doctor who recommended an internal pain pump. This is a morphine drip, essentially, placed into my abdomen, which I then pump when I feel the agony coming on. I decline, not yet ready for another apparatus. Probiotics. Lost days. Days packed so full, no one will notice the ones when I’m useless.

Remember, this is the timeline of the health crisis. One only needs to look back at PaperGirl, or the issues of Quilty magazine or the shows, or the other shows, to see that life has been much more than just this list of woe and setbacks. Joy and wonder, and gifts abound in my life. Success and learning and all kinds of wonderful life has been lived since 2008. And there have been all sorts of failures and good, old-fashioned crappy (hey!) days that had nothing to do with any of the body stuff, too — that’s the real kicker. Good, bad, or otherwise, though, this timeline is a specter. My experience and condition don’t define me, except that both kind of do.

I am going to make cookies for Yuri now. Good grief! [Correction: Cookys! I meant cookys!!]

28 Responses

  1. Bethany Wise
    | Reply

    WHAT???? You’re going to make ordinary COOKIES???? Not Cookys???? 🙂

    • Sydnie
      | Reply

      Ha! I thought the same thing! 😀

  2. Debby
    | Reply

    There is nothing I can say that hasn’t been said already. However, know that one more person is rooting for you and for others out there with the health problems we will all eventually face if we haven’t faced them already.

  3. Mary Ann
    | Reply

    Part 2 sadder and worse than part 1. But I do remember Paper Girl full of giggles and interesting facts, quilts and fabric and love creeping it’s way in Mary. And a show full of the same with no hints of the sad struggles and midnight bus rides. You are a very strong woman Mary Fons. Careful hugs and all the positive energy I can spare!

  4. Susan Davies
    | Reply

    Hi Mary, I am 67 years old and have had my share of trouble in life but I have never remotely dealt with what you describe. Neither has anyone I’ve known and I’ve seen people suffer pretty bad. I can’t imagine much worse than the pain and trauma you describe. Believe me, it takes nothing away from anyone to feel your pain but in some way it adds to our humanity when we make a real emotional connection with someone we have never met. Hearing your story adds to my life, it doesn’t take away and I wish you could just accept that people besides your family really care when they hear your story. I think it would all make a good book and I would buy it!

  5. Lorraine
    | Reply

    To the first part of your blog about we’re all going to rot you’re right! I asked my Dr one day while going thru the same mess as you why was God doing this to me? He said it’s not God it’s man! Meaning our chemicals in food, fertilizers, bad water, etc. Somehow it made sense.

    You’re description of the fissure is right on! Wish I had thought of that. If you are trying to stay with the “J” pouch I wouldn’t. My God you’ve gone through to much with it. I went in the operating room almost dead, they did the ileostomy, I came out well. My hubby, boyfriend at the time, said I had color in my face! I can’t tell you how much different you immediately feel once the disease is out of the body. Is it really worth all the bad things you’re going through to not to have an ileostomy? I’m wondering if God has not guided you to new doctors in NY for a reason? You have a new man in your life too. Just think it’s a little bag vs a life of pain, sickness, and the horror of what you’ve already gone through. You can get through this. You’re strong, a survivor, look what you’ve already gone through. I’m telling you an ileostomy is easier than what you’ve gone thru. Praying for God’s peace and guidance for you.

  6. Jody
    | Reply

    You spelled cookys wrong. Bwahahahahaha!

  7. Faye
    | Reply

    I will say you look fabulous every time I see you and your energy is contagious..
    You are one hell of a strong woman.
    Keep your sweet face to the sunshine honey!

  8. Lisa E
    | Reply

    Well, you still get my well wishes for better health and a more peaceful life. Let us know when you perfect that chocolate chip cookie (cooky)!

  9. Edwina
    | Reply

    It is brave of you to share. Uc is not a pretty Hollywood disease. It is war. You get choices but all stink. Chronic illness adds a layer of unpredictability and mortality to life My mother in law had a favorite saying. ” man plans, God laughs”. Take care on this journey not of your choosing

  10. Mary Ann
    | Reply

    You are wise to pack your good days with living. Here’s to the good days!

  11. Andres
    | Reply

    Ms. Fons, you are the Energizer Bunny of the quilting world. I don’t think I could have done anything feeling as bad as you do. Keep beating your drum.

  12. Jean
    | Reply

    In my 66 years, I truly believe June of this year was the worst, or close to it. Having been raised Catholic, we had the Baltimore Catechism drummed into us. One particularly bad night when I dumped half of my dinner on the floor, I questioned my existence. “Why did God make me?” “To know, love and serve God.” Oh, it’s not about me! What a revelation!
    As you stated, we all have our issues as we age and fall apart. I believe it serves us best to be strong, creative and as silly as possible. You certainly are all of that! Have faith, Mary! We will pray for you, like it or not! 🙂

  13. Sydnie
    | Reply

    The beauty of healing energy & happy thoughts & prayers & whatnot… there is always more where that came from! So, sending all of that positivity (?) to you doesn’t lessen what we send out to others… if anything, I think it just increases all of it! I’m a pretty recent convert to quilting (thanks to my mom, who’s a huge Love of Quilting fan!), and have only found you (and your shows, blog, book) over the last year or two, but I’m definitely a huge fan! I love your writing and your quilting, and you seem like a genuinely super awesome and fun person who would be a kick-ass friend. So, here’s some happy thoughts & healing energy to you (and to all of my other favorite folks who are suffering through anything). You’re awesome!

  14. Ruby
    | Reply

    You joke and you smile on TV and underneath you are going through turmoil. Healing energy and prayers. Having lived with a person who had a stoma and bag, I can relate to the leakage, the pain, the rash, etc. Then you go to work and smile and somebody asks how you are doing and you smile back and say doing great. Bless you through this journey in your life.

  15. cath y
    | Reply

    Mary, I am praying for you. I have a family member with UC and there is one of the top doctors at the University of Chicago. He put my family member on a new drug and they are so much better this doctor is the top in the country. I belong to CMG and follow Quilty religiously you are amazing for what you go through. I hope you feel better soon.

  16. Shirley Fass
    | Reply

    My gods girl!! I don’t how you do it all! But good for you that you don’t let it stand in the way of living! You could be all whiny and full of self-pitty (and deservedly so) but you are not. Take good care of yourself first and worry about the rest of us in the quilting world later. What a hell of a thing to have to live with everyday. But you do it with class and keep your focus on what you want or need to do. You are my new hero–stay strong girl!

  17. Cheryl
    | Reply

    Damn lady, that really, really sucks. Do not, for one minute feel bad about the compassion coming your way. You deserve any break. And that you’ve been living, working, moving, loving in the midst of all of this!

    (My brother, by the way, is a colorectal surgeon, but he lives nowhere near NYC.)

  18. Megan Peacock
    | Reply

    Dear Mary- I do not “know” you personally- just from your delightful warm quirky appearances in the quilting world. But just from the light that you cast through your written words on my computer screen I have come to care for you as another dear member in my quilting family. Your words here make me so sad for all that you have endured. I pray for physical healing for you and wish you an abiding spiritual peace as you cope with yet another turn on your UC road.

  19. Crystle Minor
    | Reply

    Strong and amazing. You are so strong and amazing to do all you do with all you have going on. Sure there are a lot of amazing people out there….. Just don’t forget you are not only one of them.. But you are one that will inspire people.

  20. Penny
    | Reply

    And yet through all of that….you continue to give of yourself to us….you. Mary Fons, are an amazing person.

  21. Megan Cullen
    | Reply

    Mary, I have enjoyed watching your Quilty show and I subscribe to the magazine, more for you and “personality” that comes through. You are a hoot! There are no words to say that have not already been said here, but sharing your story has touched many others in a very positive and human way. You seem strong willed and so I will rely on that part of you and your humor to see you through all this. Blessings to you and Yuri.

  22. Pam Pollock
    | Reply

    Hello Mary, Being on the receiving end of prayers, healing thoughts and best wishes is never easy. Accepting with grace what others offer is a gift. A gift to them that offer the wishes. Sometimes it is about letting the other person do for you what makes them feel better. It is a reciprocal arrangement. And prayers, healing thoughts and best wishes are infinite. So still sending the above to you! Tons of healing prayers!!!

  23. Sharon Macomber
    | Reply

    I have been reading backwards from your most recent posts. I am a strong believer in prayer and healing thoughts. I will keep you in my prayers and push healing thoughts your way. Your outward appearance in no way would have indicated you have been fighting such a battle. Love your quilts, love your energy, keep your focus where it keeps you feeling your best. Your Yuri sounds like fun, more chocolate chip cookys for him.

  24. […] I possibly care when the doctor tells me I’m not bleeding internally? My long-lost colon literally ate itself to death, but it appears my j-pouch don’t even want a […]

  25. […] warning above most definitely applies to this post and this one that give you the full, bleak story of all that if you’re interested. I recommend setting […]

  26. Doris Joslin
    | Reply

    My brother-in-law nearly died of same thing, but healing took place when he totally stopped ANYTHING dairy

  27. […] way, if you’re new around here you might want to read Part I and Part II of my health history timeline because you’ll want some background for tonight’s post. […]

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