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Posts Tagged ‘pancreatitis’

Life gives us many journeys.  I don’t think that life is confined to just one adventure or journey or road or trail.  It’s made up of a combination of paths and hikes and jogs and strolls, depending on what is going on at a particular time in your life.  The beginning of May three years ago was the beginning of one of my life hikes.  The climb was steep.  Overwhelming, in fact.  Rocks were tumbling down around me and at times I just curled up and tried to survive the onslaught called gallstone pancreatitis (click here if you want the story from the beginning).

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Weeks in ICU, a pseudo-cyst in my abdomen that made me swell larger than when I was pregnant, pain so intense that I couldn’t move or breath for fear of triggering a greater ache.  My only nutrition for about seven months was from a bag I carried around to a picc line in my arm.  My pancreas was removed except for 30%, my gallbladder is gone and my organs are rearranged in a way that affects my digestion and creates a constant pain.

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But I did survive.  Two and a half years later, after working my way through a laundry list of problems and ailments – some temporary (the need for iron infusions each week) and some permanent (diabetes) – my doctor said, “You need to gain more weight.”

I was a ghost.  I had gained 60 pounds in one week because of the pseudo-cyst and water retention at the beginning of my illness.  I then lost much more than that while on my picc line.  I had survived but I wasn’t very healthy.

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My ability to eat real food was a challenge for many months so when my body finally kicked in and started hanging on to the food I was eating, craziness happened.  I’m not kidding.  The diabetes wasn’t familiar to me and we were playing with my insulin a lot.  I wasn’t experienced in how to read my new body and the sugar lows so when I finally felt cravings for food I acted on them….even when it happened three times a night.  I was ravenous.  Suddenly starving after 2 years.  Since I was told to eat, I ate.

Six months later, I was 20 pounds overweight and my doctor was saying, “OK, now you need to lose weight.”  Talk about frustrating!  I couldn’t believe I had done that!  But I tried not to beat myself up too badly because again, this was one journey I was on in my life.  One experience.  One adversity.  One challenge.  And I was working my way through it.

This was so much more than losing weight, though.  My pain level was still controlling me on a daily basis and I was on many different medications and supplements.  A pill for this, a tablet for that.  I looked at my handful of pills one night and thought, “What am I doing?  There has to be another solution.”

Thus started my attack on my own poor health.  I have a 4-year-old son and I wanted to live a long and healthy life with him and for him.  It was time to tackle this thing.

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What have I been doing since?  Knocking out my health issues and taking control of my own body in more natural ways.  I believe in doctors.  I believe in medication and prescriptions.  But I was ready to try some holistic options for certain things.  Here’s what I’m doing and how it’s affecting me:

1.  FOOT ZONING

My first step was to try foot zoning because my neighbor, Kathleen, has been certified in it and she is a down-to-earth person who was looking for ways to help her family with different medical issues.  She is not mystical or too extreme and that is why I finally tried it. It is similar to reflexology where the entire body is mapped out on the feet but as they work and massage the feet in a specific pattern and method, the entire body is affected.

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My expectations were low and there are many claims of things that it can do to help our bodies.  I didn’t really see the kind of results that others might experience with this method of treatment but after the initial series of 8 sessions, there was one major change in how I felt.

My energy level was remarkably improved.

For the first time in 2 1/2 years I could keep up with my son.  I still felt pain every day but I no longer needed a nap every afternoon.  Naps were over for me and I could move easier and was more free than I had felt since I got sick.  That was worth every penny.  I still do foot zoning about every two weeks to keep things going.  My health issues are long term and we are working toward a maintenance schedule of once per month.  Foot zoning is one piece of the puzzle in my attack to gain a healthy body.

2.  ACUPUNCTURE

I had heard that Chinese acupuncture helped with pain and since I was taking 6-8 low-grade pain pills in every 24-hour period, pain was ruling my life.  I went to a local acupuncturist with hope but again, not very high expectations.  I started on a 8-session series where I visited her twice a week and she targeted my abdominal area, digestion and pseudo-cyst area.  She also worked on helping me sleep better and controlling my food cravings.

Acupuncture has changed my life.

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After 6 weeks I was able to drop to just one pain pill every 12 hours and I’m working on getting off of those right now.  I have left behind many of my other meds because my digestive issues are more controlled and healed.  My body temperature has been extreme – I am always hot and can’t really function in anything but cool areas since my illness.  My body temperature is now more normal.  My food cravings are very controlled.  My sleep is better than it has been in a long time.  I have to roll Jason over every night, usually twice a night, so being able to maximize my sleep and get back to sleep easily is really important to my overall health.

I am now down to one session per week and feeling the effects like nothing I have ever experienced.  I am a believer.  After feeling this kind of pain for almost 3 years and to be virtually free of it after 6 weeks is remarkable to me.  I feel balanced in so many ways and I am grateful for this method of treatment that has literally changed my life.

3.  HEALTHY LIVING CHALLENGE

Finally, my friend LynDee spearheaded a challenge that has been floating around the internet for awhile, tweaked it to fit the needs of our neighborhood and invited some truly committed women to be a part of it.  It involves having partners to keep you accountable, exercise almost every day and keeping track of good and bad foods you eat.  Everything has a point value and the goal is to get as many points as you can by the end of each week, report your points and see where you land on the leaderboard.  Oh, and you get points for losing weight but weight is not the focus here.  It’s all about eating right and moving more. (click here to see post explaining the challenge & free downloads)

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I’ll share the program in more detail in this future blogpost but I want you to think about joining in with us for our next 6-week session.  We’re finished with our second session this week and we will be starting up again on April 12.  Start thinking about it.  Do you want to change your health?  Nutrition is key and this challenge helps you focus on healthy eating and healthy habits.  I’ve lost 14 pounds in 8 weeks but more than that, I look great.  I look healthy.

FINAL THOUGHT

This is my journey.  And my tools to navigate this particular path.  It may not be the same path that you need to take but I wanted to share my experience with you since it has impacted my overall health so dramatically in just a few short months.  I started Foot Zoning last fall but acupuncture began 10 weeks  ago and the Healthy Living Challenge began just six weeks ago.  All of these things are working together for the same goal.  The same good.  The same results.  One step at a time.  I am not an expert on any of these things.  I’m just sharing my experiences.  I add what I can, when I feel like I can tackle it.  We should all do what we can, when we can without feeling pressure to do something we are not ready to do.

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I am reminded of this post from 2011 (click here for free download).  The idea of balance applies at every stage, including this one.  But I can’t help thinking of it in new a new light – balanced energy, a balanced diet, a balanced spirit, a balanced body.  This is what matters most right now in my life in order to make the most of the rest of my life.

But I would love to join you on my journey this next round of our Healthy Living Challenge!  Watch for more info about the program – coming soon!

Here’s to a journey full of health, energy and joy.

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I’m here sitting by the pool with the sun shining down and a pile of books loaded on my Kindle.  What could be better than that for the birthday girl?  I find myself settling into my vacation – physically, mentally, emotionally letting go of stresses or deadlines, lists of things to do and not enough sleep to make it happen.  That gentle easing of the mind and body that happens when you have the chance to let go for a minute.

Someone said to me before I left, “You deserve a good break!”  After almost two years of battling back to reasonable health and some sense of normal life, that is probably true.  But I find myself today thinking about that idea of getting a break and I’ve decided that it doesn’t really describe how I feel about my vacation.

After waiting for 16 years to have our little Cole, you can imagine my desire to savor every second of motherhood.  That doesn’t mean that I love every second of it.  It simply means that I don’t want to miss a thing.  This is my one and only chance to watch a little person develop and to have a hand in the process.  The changes and stages fascinate me as I witness someone grow before my very eyes.

But that doesn’t mean I don’t get tired.  I do.  You already know this.  However, I’d rather describe this week away from responsibilities as something other than “a break” from motherhood.  A break seems like such a harsh word with its jagged edges and severed pieces.  I’m thinking of it more as a little rest – with my heart still attached to the ones I love across an ocean of miles.  I want to reach out and touch my boys with one finger, just to make sure they are still there.  Still a part of me.  Still my life.

When I was in the throes of recovery from my pancreatitis, I couldn’t lift Cole.  I also couldn’t hold him near me because of the risk of elbows and knees and hands bumping my swollen belly.  When I was able to start holding him, he would have to climb up onto the chair or sofa next to me.  One day I was trying to put him down for a nap.  He usually goes right down without any fuss but this day he exercised his independence to let me know that in bed was not where he wanted to be.  As he wailed both verbally and physically in my lap, I thought I wasn’t going to be able to make it through that moment.  His wrestling hurt my belly and I didn’t have the strength to fight the wiggles.

I remember joining him as he cried, both of us with tears running down our cheeks.  Him wanting anything other than a nap and me just wanting it to stop.  I cried as I spoke softly to him, “Cole, please.  Mommy can’t do this.  I need your help.  Please help mommy.”  His 18-month-old mind didn’t understand.  And I wish I could say that a special miracle happened and he settled right down simply because we both needed him to.  But he didn’t.  He kept wiggling as I kept praying and we both kept crying.  Finally I had to just put him in bed and walk away.  He fell asleep soon after and we both took a nap.

Motherhood is stressful.  It’s tiring and taxing.  But even in the worst moments of my illness I have never wanted to give it up.  I have never wanted to make that break from this child of my heart.  But I have wanted to rest.  Needed to rest.  We all need to rest.  From whatever fills our days – whether it’s work or a spouse or children or not.  We all need to take moments where we can sink into a state of peacefulness and let go of some of the stresses that make up daily life.

You deserve a rest today.  Or at least in the near future.  I hope to return home with even more love in my heart and more strength to carry out that love.  Just a little rest.  Enjoy it.  I’m loving mine.

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It’s March.

I’m just getting around to talking about my word for 2012.  I chose it weeks ago.  I just haven’t felt ready to talk about it yet.

This is fitting, though.  It’s the exact reason why I have chosen my word.  Over the 22 months I have been getting, experiencing and recovering from gallstone pancreatitis the key word for my life was “survive.”  Sometimes it was physical survival, when I spent time in the ICU.  Sometimes it was mental survival, when the constant pain management was anything but managed.  I could barely think beyond the pain because it takes over your thoughts so completely.  Sometimes my survival was emotional.  Will it ever end?  Will I ever be able to walk further than around the block?  Is this the mom that Cole will know?  Then there was the spiritual survival.  I don’t care what religion you practice or don’t practice, when your life is threatened or you have major adversity, your sense of spirituality is shaken or strengthened, thriving or non-existent, depending on the moment.

It has taken almost two years for me to be able to imagine life beyond my health.  I feel myself taking one little toe and stepping it outside of my circle of pancreatitis that I have built around me.  One little toe.  Trying it out.  Is there life outside of this world that has been my reality?  I haven’t been totally sure.  But I feel ready to find out.

Emerge.

That is my word for 2012.  Not survive.  Not cope.  Not stumble or fumble through.  Emerge.

I can stand straight now instead of hunched over protecting my belly and all the craziness going on in there.  I can put my shoulders back without pain from the stretching.  I can take lengthy strides instead of shuffling along.  I can lift things.  Push things.  Pull things.  Reach.

And I don’t mean just physically.  I am setting goals that a real person might set instead of a sick one.  I’m looking forward.  Looking up.  Looking ahead.  Believing I can actually participate in an event or activity instead of putting a question mark next to it because I may not have the energy.

Due to necessity, I have adopted the stance over the last two years of holding my arms over my stomach.  It’s a protection.  Protection from my toddler’s elbows and knees.  Protection from simple obstacles like walking in a crowded area.  Life puts us in physical contact with many things and I’ve had to learn to protect myself from that for the simple reason that it hurts when things touch me.

No more.  Do I still feel pain?  Yes.  But it’s not very bad.  I have some areas on my belly that are numb and will probably never get feeling back.  I have a 9″ scar that runs down the middle of my belly that I’m really looking forward to showing off this summer – ha ha!  I am bruised from insulin shots and we are constantly monitoring how to deal with that as my body continues to heal and change.  This is my new normal.  My reality.  And I think I’m ready to face it instead of just survive it.

As I have pondered the word I wanted to focus on this year, I kept coming back to something visual and powerful.  No more sitting on the sidelines.  I’m ready to step out.  Slowly, at first.  But that’s ok.  A step is a step.

You will see that my new blog header shows off my word.  I love the color choice.  I’m not a rainbow person but I feel very strongly that this is the year for branching out, experiencing all the hues that life can offer me in my new body and this blending of colors represents the life palette I want to create for myself.

And of course, the butterfly.  I know it might seem obvious but I kept coming back to it.  My hunched over body has been cooped up in a cocoon of my own making.  A protective shell, true.  But so much more than that.  A place of development and change and growth.  A place for becoming beautiful and fighting your way out to the world beyond.  The parallels of a butterfly’s creation to how I feel about my life experiences overwhelm me to the point that I cannot ignore this lovely butterfly as I think about my word.

Since I chose my word things have been happening.  Opportunities and experiences that I am not sure I would have pursued six months ago have presented themselves in my life and become part of this personal emergence.  I believe this has happened because I have been consciously thinking about specific ways that I can apply my word to my life.

The power of a word.  One little word.  I love my word for 2012.  And I look forward to sharing with you more about my opportunities to emerge as the days pass.  Thank you for being a part of this journey with me.  Your cheers and prayers and love over the last two years have all brought me to this place, where I finally feel the reality of embracing an empowering word like “emerge” in my life.

Here’s to one little word.  And the life we live because of these little words.

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I just had major surgery.  Official Name: Component Separation Ventral Hernia Repair.  It means they removed the avocado-size scar in the middle of my abdomen and attached my abdominal muscles back together so I can do a sit-up someday and it will actually have an effect.

We’ve been planning for months, waiting and waiting and waiting for my belly to be ready for the reconstruction and repair.  Everything about it has gone more smoothly than expected.  Everything.  The surgery itself.  The recovery.  The fact that I went home from the hospital just less than two days after instead of the expected four.

I have eaten scrambled eggs and hash browns for breakfast about six times – the first being only 18 hours after leaving the OR.  The powers at be seemed to like that part.  They also keep asking questions about passing gas and other things and let’s just say that I should win a blue ribbon in that area.  It’s extremely important, I guess, and I’m doing well.

For some reason I haven’t wanted to talk about this surgery on the blog.  I don’t know why.  No reason, actually.  Maybe I just felt like I would rather just get the job done and move on. I had TOTAL confidence in my surgeon and the surgery itself.  No stress whatsoever.  But I was anxious about things going wrong with the recovery and having months and months of yucky pain to deal with.  Yes.  I’m pretty sure that’s the reason I haven’t talked about it till now.

However, I am normally a dismal Facebook-status-keeper-upper.   But for some reason, adding little snippets of life in just a minute or two are exactly what this healing body is in the mood for right now.  Had no idea that Facebook-statusing it would actually give me something to look forward to instead of sitting on the sofa, being sad that I have already worked my way through ALL of season 3’s Drop Dead Diva episodes!  Boo.

So if you want to hear about the baby steps I’ve been making since my surgery last week then feel free to click here to see my latest status updates.  No sense repeating them here, then they are already there.  Right?  If you’re not interested (Mom, it’s ok if you’re not), then don’t click and be sad with me instead about having to wait for the next season of Drop Dead Diva.

By the way, my pseudo-pregnant looking belly is at least half the size it was 12 days ago.  I’m crossing all of my fingers that the swelling will only get better…or should I say less…from here.

Here’s to healing!  XOXO

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Another Anniversary

April 20.  That was the date of my last post.  Really?   Yes, Kolette.  Really.

What have I been doing that could possibly keep me from jotting down a few lines in blogland?  As I started to write, I had to pause and think for a moment.

Ah, yes.  That’s right.  Hospitals.  Surgeries.  The usual.

My dear Jason went in for a routine surgery about six weeks ago.  Three weeks later he had a raging infection brewing inside his belly at the surgical site.  Honestly, he looked terrible.  Terrible enough for even me to take notice.  After being admitted again to the hospital, they did two emergency surgeries on him, removing all the crazy infection and hooking him up to a heavy dose of IV antibiotics.

I guess someone in the Hall family needs to have a PICC line at all times.

It’s been a little slow in recovering from this one but he is doing better and getting around more the last few days.  It came as no surprise to either of us that this drama all landed right smack in the middle of my one year anniversary of pancreatitis.  One year ago I went into organ failure.  One year ago my life and my body changed – probably forever.  One year ago our little family learned a little more about service and miracles and how to stick together to solve a problem.

I thought I would let you know where I am now that 12 months have passed.  Shockingly to me, life is not back to normal.  I assumed that pancreatitis would simply be a distant memory by now.  It’s better, but not quite all the way better.

  • I still have daily pain related to all the craziness that went on in my belly.
  • My digestive system is a mess – but I am eating fairly normally.  The days of a meal consisting of four tiny bites are over!
  • I “glisten” after I eat anything.  It’s like my system just had a workout and I develop a lovely sheen for about 20 minutes.  The doctor is perplexed as to why that is still happening but it does seem to be getting better over time.  We’re trying probiotics and other things to see if my body will respond better.
  • I am off my enzyme pills.  I found that my body didn’t seem to be in any better shape using them so they are a thing of the past.  This is good news because it means the 30% of my pancreas that is left is doing SOMETHING.
  • I am still taking insulin each night to manage my diabetes but it’s working so well that I only  have to check my blood sugar about every other day.  I’m a very low maintenance diabetic and we have a glimmer of hope that it will get even better in the future.  We’ll see.
  • My hair is growing back.  Hooray!  I thought it would but I couldn’t help worrying that maybe it wouldn’t.  This is yet another time in my life that I am grateful that my hair grows super fast.
  • I still look pregnant.  I haven’t really gained much weight back so my body looks skinny and my belly pops out like I’ve got a soccer ball tucked in there.  This is because my fascia layer (whatever that is) is stretched out and it will not get back to normal without surgery,
  • I still take a nap almost every day but if I miss a day or only get to rest for an hour then I’m usually fine.  “Feeling bad” comes in waves instead of being constantly with me.

  • I can chase Cole (onto the soccer field during our neighbor’s game).  I can even toss him in the air and tickle him and do all the stuff a mom wants to do with her two-year-old.
  • I have started working again – watch for my dollar stamps starting up again this Halloween!  I can’t put in the hours I’m used to but I’m getting there.
  • I even managed getting the planting done last weekend.  That was a big step for me to tackle the physical labor.
  • I’ll have a final surgery in about six months to deal with my belly.  It’s all part of the process.  My surgical scar is the size of an avocado, I have a little hernia bubble poking out on my abdomen and that stretched fascia layer I mentioned earlier.  All of these things need to be dealt with surgically to try and get me closer to normal than I am right now.  The doctor wants me even more healed than I am right now before tackling that issue.
  • I still love my doctor.  I still am in awe of the service and love and prayers that have been shared for me and my family.

Thank you for being there with me.  And for me.  It’s nice to know that there are friends waiting for you on your journey back.

I have high hopes.  The next 12 months are going to be great!  They certainly have to be better than the last 12, right?!  Here’s to moving forward, baby step by baby step.  And loving the miracles and tender mercies that pave the way.

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Emerging

When a person goes through adversity, it sometimes feels like it will never be over – that this is how life will always be.  I felt this many times while Jason was recovering from his car accident in 1993.  After thirteen months in the hospital and dozens of surgeries and hospital stays after, “rehabilitation” seemed to last forever.  For me, the last six months have been no different – it seems like being sick will never end.

 

My ICU stay in May

 

But it doesn’t last forever.  Whether the adversity goes away or stays with us, changes are inevitable.  After six months I am profoundly grateful to say that the changes happening to me with regard to my health are changes for the better.  I have had a couple of weeks of feeling dramatically improved.  I’m not quite sure why or how this has happened except that in my mind it is a miracle, both scientific and spiritual in nature.

I have had the best care possible, both from medical personnel as well as family and friends.  I have been watched over and loved in a way that I hope all who experience difficulties are cared for.  My gratitude is deep for the blessing of people who have surrounded me and buoyed me up and kept me laughing in spite of everything.

It has been a long six months.  I feel like 2010 is simply a black hole called “Gallstone Pancreatitis” where all normal life was sucked out, never to be seen again.  And the journey is not over.  Yes, I have had a couple of good weeks.  Great weeks, really.  And I hope and pray that they will continue.   But I still have further to go.  My stamina is increasing but I still can only do activities for an hour or two before I need a rest.  I still need a great deal of help in caring for our little boy.  I’m still being fed through an IV because I can’t eat enough calories to be nutritionally adequate.  I still take a nap every day.

 

Cole and I at the pumpkin patch last week

 

But Jason, Cole and I are together as a family and even though babysitters and friends and family still pitch in on almost a daily basis, we have come so far since May 1.  I can play simple games with Cole instead of just watch him playing.  I can hold him and carry him and hug him without help.  I did a little work last week for the first time.  I can drive myself to the hospital for my appointments and procedures.  I can even write a post or two on my blog.

I’m not fully recovered but we have come so far.  And for that I am grateful.

Thank you for your support via cyberspace.  I would like to say, “I’m back!” but I think that is too ambitious.  I’m thinking that I can post about once a week but we’ll see how that goes.  For the last six months my life I haven’t been able to give even a thought to expressing myself through this blog but things are changing.  I’m getting better and I hope that the best is still to come.

Here’s to emerging from the black hole and all the joy that comes with overcoming our challenges. Thanks for staying with me as I transition from my life revolving around my health to my life revolving around my life.  Yes, life is what I want to be focused on now and I look forward to sharing it with you.

Many thanks,

Kolette

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It’s true.  Kolette is officially a Type I diabetic.  We knew that it would be a possibility since she only has 30% of her pancreas limping along inside of her but we were holding out hope that it could hang in there and do its insulin job on its own.  No such luck.

Last week her blood sugar levels were rising substantially and she had non-stop nausea and throwing up along with it.  All of this led to a visit to her doctor who promptly sent her to the Emergency Room.  They hooked her up to an IV and she immediately started feeling better – dehydration was clearly a problem.

Not only did they commence to treat her for the dehydration but wanted to watch her more carefully for infection and other issues that were showing themselves in her lab work.  Thus began a two-night stay in the hospital and her first lessons on how to administer her own insulin to keep her blood sugar levels under control.

No infection was found so Kolette left the hospital feeling much better and armed with plenty of Nova Log pens to keep her going for a while.  Now our lives include blood tests and injections and it’s an adjustment for sure.  We would love to hear from any of you who deal with diabetes in your lives.  What have you found are the best/easiest glucometers?  What is the best tip you could give to someone in our situation?

Kolette has a new post-surgery doctor who specializes in pancreatitis and his team includes a diabetic nutritionist, physical therapists, and even a nurse who will call her each week to see how things are going.  We know we are in good hands as we learn how to navigate this journey over the coming months.

- Jason

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