Monday, September 28, 2015

J is for Joy

It might take me a year to get through this whole alphabet post challenge...

J is for Joy.

A lot has happened since my last posting in June. A whole lot. To start with, my sweet Grammy (dad's mom) went to heaven and my grandfather (mom's dad) followed a few hours later which made for a very sad day. It also meant 2 funerals in 1 day, if you can believe that. Although we may be sad, it's also such a blessing as both were suffering terribly from failing bodies. I managed to navigate through those few days on massive amounts of meds as I was actually very sick with this stupid Crohn's mess. The pictures from then portray my struggle vividly. Shannon and boys happened to be in Alaska on a fishing trip with his dad when all this went down but thankfully my sister and her 3 kiddos were here so I wasn't alone in my grief. The one nice thing about death in our family is that we all come together from all over to celebrate our loved one's life. There are tears but there is far more laughter and for that I am eternally grateful.

I'm so faking it here, can you tell?
As I said, I was extremely ill during all of this so when things settled down and we moved kids out and into their college lives we headed to Temple for a visit to Scott and White hospital. I was having such extreme abdominal pain and a burning sensation that would just not quit. Eating solid food made me miserable beyond belief so I was existing on protein shakes and baby fruits. The oral pain meds prescribed were worthless and at times I thought I might black out due to the severity of the cramping. We spent the first night at the ER hoping they could give me something intravenously so I could get a little relief. Five hours later and a hit of dilaudid we went back to the hotel for about 3 hours of sleep before my appointment with the GI clinic. Long story short, many tests later, and after a 6 day hospital stay it was determined that my pancreas was not functioning correctly. It was not producing enough enzymes and therefor throwing off the rest of my rebellious gut function. This is not uncommon in Crohn's patients, something like 40% have pancreas issues. Great another bonus... Good news though, it's a somewhat easy fix with a medication called Creon. I take it 3 times a day, easy-peasy. The docs also changed up my pain meds giving me more relief so that I can function better. Big relief there!

I was also given something for anxiety, a direct hit to my pride if I'm being honest. The truth is, I am struggling to make sense of this place in my life. Depression threatens to overtake me at any given moment and almost won out this summer when the pain was so overwhelming. It's strange what you know is right in your mind but somehow you can't seem to process it in a healthy manner. All I could think of was how to stop this relentless physical pain that was controlling my every moment and thought. I will tell you, I went to a very dark place that I care not to ever visit again. It scared me. It scared Shannon too. It prompted me to get counseling which has been a huge help. Between the new meds and counseling, I am in a much healthier place.
drinking endless amounts of barium

Poor Shannon has really struggled too. He's dropped close to 40 pounds due to stress. He looks amazing so you would never know how hard this has been for him too. He carries so much responsibility and often takes on my pain as his own. I hate that he has to deal with all of this. He is the love of my life and I would do anything to make things different.

You might be asking, Monnie--where is the joy in all this??? This post is supposed to be about joy right???

Yes, well, I'm getting to that.

The last few months, ok more like the last 10 months, have been excruciatingly hard. Maybe some of the hardest I've faced yet.  It's made me question everything and I do mean EVERYTHING. My attitude has been terrible. Negativity and jadedness have been my constant companions. It finally dawned on me that if anything is going to change it will have to start with me and my outlook. Easier said than done. I haven't cracked my Bible in very long time but yet, my mind kept hearing a particular verse over and over. It really pissed me off at first too but eventually I gave in and listened.

James 1:1-4
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish it's work so that you may be mature and complete, not lacking anything. 

I still find this impossible most days but I'm trying. I'm working on my core. My emotional core, believe me, I'd rather do a few planks and call it good but it's not that simple. I'm going deep into the far corners of my soul and pushing through some of the ugliness that this constant struggle with Crohn's has brought to the surface. I'm dealing with crap I didn't even know I had! It's hideous and it's exhausting but it's worth it. In the end, I will still have Crohn's and I will still be a flawed human but I will have peace and even joy.

Funny thing about all this, I am starting to see rays of sunshine where darkness used to be. My appetite has come back and brought a very persuasive sweet tooth. I have to count this as joy because I'm not looking like a concentration camp survivor anymore. The boobs are coming back but unfortunately so are the hips and butt, oh well--it's healthy and that's the most important thing.

I've decided now that the kids are off doing their own thing that I want to do something I enjoy and might add a nice distraction to my current situation. I'm selling Premier Jewelry again. I sold it about 5 years or so ago and loved it so it was a natural fit to pick it back up again. It will give me something to focus on and loads of fun bling! Check it out, Premier has changed a lot since I was last in and I LOVE the new stuff! All bout the Icing is my website where you can view the catalog. I'm kicking off this Saturday with a party at my house from 2-4 if you are around, stop by for some treats and bling! Feel free to message me if you want to order and I will hook you up, remember, Christmas is right around the corner. I will even gift wrap it for you too.

It's really weird not having the kids around on a daily basis. We spent 15 years living by the school schedule and now I find myself very undisciplined with out it. I love it though I don't get a whole lot done. I have yet to find my groove but hopefully as my health improves that will too. It has been nice that while I try to get myself healthy I'm not forced to adhere to school commitments on top of everything else.

In 2 weeks I am headed to Oregon! I cannot even begin to tell you how excited I am about this! I will be attending the 3rd annual Girls With Guts retreat. And get this---we will be staying in TREE HOUSES!!!!!! I mean really, does it get any better than that? I missed last year's due to Thomas' senior year of football so I am really stoked about this year. I'm looking forward to seeing my "sisters" from the 2013 retreat. We come from all over and from different walks of life but share a bond not many people understand. In many ways, these ladies inspire me on so many levels. I love my Girls with Guts!

Friday, June 5, 2015

Memories of a Life Lived Abundantly

The seconds on the clock seem to be in slow-motion, each one forcing the hands of time to inch slowly along as if they weigh a thousand pounds.

We are waiting. Waiting for the minutes to stop their drive to move time forward. Waiting for her soul to be released into the arms of Jesus. It's why she lived with such grace and abundant love.

Memories of life and love flood my mind like the old black and white silent movies. I stand paralyzed in my grief as the images dance past the backs of my eyelids. A smile on my face even though my heart is breaking.

I see the young woman as she meets her future husband and the sparks that ignite bringing color to this moment in time. The promise of a bright future and many blessings.

Flashes of babies, camping trips and flavorful food that caresses my mind's nose.

Christmas trees and gifts that flow into the middle of the Hinkle house living room surrounded by their children and their children's children.

Memories of crawling through the pass-through closet as we hide from the mean cousins who inevitably catch us with squeals of delight and shushing from the adults.

Creeping down the basement stairs to spy on Gramps while the musty air of the damp dirt floor imprints permanently on my senses.

Holidays and special occasions celebrated together with mountains of home cooked goodness and laughter that fills the air.

Bible stories and silly games always on the ready for all gatherings.

Summer trips to the sand dunes in the big green machine while sitting on the long bench next to her pillow booster seat.

Snow cones and mud pies, sidewalk chalk and water guns, blanket tents and haunted houses, red wagon and green wheelbarrow rides that might turn to races at any given moment. Walks to the graveyard and bedtime stories of days long ago. Bunk bed hideouts and games of hide and seek peppered with peals of laughter will forever be stored in my heart.

Piles of family loaded in the Winnebago for fun eats, treats and adventures.

"Going to town" just a few blocks away to do some shopping and a great excuse for a sweet indulgence of some sort.

Large orders of delicious foods from the Burrito Lady, Foxy's and Twin Cronnie's spread out like a feast for kings. Vanilla cokes, Cherry Doctor Pepper's in huge cups from Taco Box to wash it all down.

Unconditional love so tangible it stretches beyond the walls of family to touch the lives of countless others.

The music of her favorite hymns gently hummed as she lovingly cared for her home plays as the soundtrack to all my memories.

I can still feel her fingers in my hair as my head rested in her lap through many church services.

The smell of fresh baked bread takes me back to the early mornings of my childhood summer visits.

Though her stature is small, her impact on my life is no less than that of a giant ship's wake rolling gently through the ocean of life. Her waves touching others far beyond what she could ever fathom.

I will miss her laughter and ever present smile but most of all, I will miss her open arms and zest for life. No matter what life brought her she always found joy in every day, happiness in small things and love in every person.

Go with God Grammy, enjoy and celebrate a beautiful life lived abundantly. Reunite with your loved ones who wait for you in the golden streets of Paradise. And most of all, rest in the arms of your Savior as he whispers gently, Well done my good and faithful servant.

Tuesday, May 19, 2015

I is for Inflammatory

I is for Inflammatory.
More specifically, I is for Inflammatory Bowel Disease or IBD for short.

Inflammatory bowel disease (IBD) involves chronic inflammation of all or part of your digestive tract. IBD primarily includes ulcerative colitis and Crohn's disease. Both usually involve severe diarrhea, pain, fatigue and weight loss. IBD can be debilitating and sometimes leads to life-threatening complications.

I have had the privilege (yes, you detect a bit of sarcasm there) of experiencing both Ulcerative Colitis (UC) AND Crohn's. July 2004 marks the anniversary of UC diagnosis. I have an ileostomy because of UC. My colon was so diseased and beyond the help of modern medicine that it had to go in 2011. January 2015 marks the diagnosis of Crohn's. We thought having my colon removed in 2011 would bring an end to the UC and it did. What we did not count on is that IBD has two spectrums to it, UC on one end and Crohn's on the other. Some have asked if maybe I had Crohn's all along? Possibly. Was I misdiagnosed in 2004? Hard to know, really. What we do know is that I presented as a textbook case of severe Ulcerative Colitis to all medical professionals and testings. When my colon was removed it was sent to the lab where it was determined to be a worthless organ completely destroyed by UC. Whether or not I had UC or Crohn's then didn't matter, I was gravely ill and needed to get rid of my colon. Having a Crohn's diagnosis back then would not have changed my therapies leading up to the ileostomy, the fact is, the colon had to go. Maybe the 3 years post colon removal would have been watched a bit closer for reoccurrence of active bowel disease, this is the only thing that might have been different. 

I can't let myself wonder on the 'what ifs.' It's a deadly mind game. The fact is, I have Crohn's disease and that's that. There isn't a cure but there are options in therapies. 

Today, May 19, 2015 is World IBD Day. I find it a bit ironic to have 1 day a year to bring awareness to and focus on IBD when it rules the lives of the people it affects 24/7, 365 days a year. For those of us on the IBD battle field, it's just another ordinary day. It's a way of life just as sobriety is for a recovering alcoholic. It's a constant struggle to feel good, to get things done, to live in the moment, to be positive. A choice to move forward.

IBD takes and takes from you. It can rob you of so much more than just your health. It has and will continue to cost people their jobs, friendships, relationships and marriages. Nothing is too sacred, IBD's reach knows no boundaries. It is a cancer set on destroying it's host. It has claimed the lives of some amazing warriors who fought very hard until the end. 

So today, I want to honor my brothers and sisters who fight this battle too. I want to tell you, you are brave and you are strong and I find hope and courage through you. Even when there seems to be no light at the end of the tunnel, you amaze me with your will and desire and dedication to make this life a better one. Putting others before you. Always stepping up to the challenge of awareness. There is comfort in knowing this isn't just my fight, I am only one of an incredible army of warriors. This is awesome because I do not feel strong enough to be alone in this. I need to be carried or at least helped along right now. I want to become one of you, the warriors, the super heroes, so that I can eventually carry someone weaker than I am. So I can pay it forward. So I can raise a fist in victory with you.

Sunday, May 17, 2015

H is for Hope

H is for Hope.

It's been a terribly long road for us. All this mess started back in early November with no clear answer as to what was happening to me, my body until late January when Crohn's was finally diagnosed.

To say that news was devastating would be a gross understatement.

I had worked so hard over the last 3 years to become healthy post ostomy surgery, post Ulcerative Colitis, post near death. I was enjoying an active lifestyle until one day I wasn't. Pain slowly crept in to my daily life threatening to rob me of all joy.

Crohn's has managed to single handedly mangle my hope.

I am fighting everyday for some sort of normalcy. I long to eat, drink and be merry with everyone.

I am trying.

I am fighting.

I am hoping that each day brings me closer to health and happiness. I am hoping that life with Crohn's will eventually just become life again, that Crohn's will no longer try to upstage me.

My hope is to turn this negative into a positive but I am struggling to find the formula to do so. I won't give up though. I can't give up.

I've lived in this void of hope and happiness long enough. I'm buying a one-way ticket outta here!

I opened my mail yesterday to find this beauty. I cried big ugly tears, snotty nose kleenex tears, not because I was sad but because someone knows what it's like to be here in this moment of loss, confusion and pain. I felt relief that I don't always have to fake feeling good, because I do-- I fake it a lot. I can make sick look good.

It's crazy but suddenly, I feel like I can keep going. Keep trying. Keep hoping that tomorrow will be a better day.

Monday, May 11, 2015

G is for ...

I've been trying for weeks with out success to write this post on the letter G. I've tried G is for Grace, Gratitude, Guts, Giving, Goodness... The list of constructive G-words is endless and yet none would take shape enough to qualify as a post.

I am frustrated with my current situation.  I wake up every morning with intense pain which worsens when I let my bladder go for the first time after several hours of sleep. Doc says it's probably scarring from disease and surgery. Awesome. I so want to be positive, to do the whole mind over matter thing but the matter is overriding the mind. It's hard to focus on the good when the bad threatens to squash it, kill and sweep it away like a pile of dust.

This weekend was the perfect example of how this damn disease (Crohn's) rules my life. We had  three couples join us at our ranch for some good old fashioned outdoor fun. We had ATVs everywhere you looked and one of the weekend's best adventures was riding them all over our ranch. It had rained for several days and the river and ponds were full creating great swimming holes and fishing. Because of the amount of pain I am in and how rough the ride in ATVs can be, I had to sit out on this part.

I hated it.

I wanted so badly to go along with the group and explore. The hours they spent roaming the ranch, jumping off cliffs in to swimming holes sounded like heaven! If I had gone I would have been incapacitated the rest of the weekend from the pain of my innards being jostled around so I sat at the cabin and read while I waited. I try hard not to let these things bother me but missing out on such great fun was extremely hard. I loved hearing all about their adventures and seeing the excitement on their faces. I just wish I could've been a part of it.

While everyone devoured amazing steaks cooked over the fire pit that evening, I drank my protein shake. While they enjoyed ice cold beer, I sipped water. I was extremely careful with food this weekend. The last thing I wanted was to eat something like steak and then be so miserable I'd have to just go to bed. 

I want to be normal again. Or at least locate my new normal.

So the letter G is proving difficult. I aim to be positive and yet I can't seem to put enough words together for it. 

I'm fighting an up hill battle and I'm so very tired. 

I took my Humira injection this past Wednesday late in the afternoon. I usually try to take it in the morning because I feel terrible for about 24 hours but I had plans I didn't want to miss. This made Thursday suck. I could not control the relentless pain in my body from abdominal cramping to joint and muscle soreness. It was so unbearable that I ended up taking the limit of my pain management arsenal and eventually knocking myself out with phenergan around 8pm. Sounds like fun huh.

The hubby was panicked that we might have to cancel the weekend plans at the ranch. I HATE being the reason plans change. Or cancel.

I think I could write a post on the letter H for Hate and it would be 10 pages long. I don't want to be this person who is jaded and negative. I don't want pain to dictate my attitude. I'm trying, really trying to put it aside and focus on the good. I have so much to be thankful for. 

My kiddo sent this text to me Sunday afternoon. He has no idea how much this encouraged me. How perfect the timing was. How I needed something to push through the pity party I was secretly holding in my honor. I am in desperate need of hope.  And joy. I used to be overflowing with joy and I've let this stupid Crohn's steal it away. Maybe I even packed hope along with joy in a box and shipped it off myself.  Whoever finds it, please mark it "Return to Sender," I will be happy to reimburse you on the postage.

Maybe, G could be for Groove? Maybe, I just need to get my groove back? No, I know I need to get my groove back. It's gone missing too, probably packed neatly in that box with hope and joy. I need to start planning some goals to get my groove back on. 

I started running after my ostomy surgery in 2011 and had the 1/2 marathon goal which I achieved 1 year later almost to the anniversary date of the surgery. I was focused and determined to not just survive that terrible year of sickness, surgery and recovery but to THRIVE. I need that energy and determination again but I think this time, my need looks different. 

So... what does my groove look like now? At the end of this month, our baby will graduate from high school and change the way life has been for me for the last 20 years. Both boys will be "independent" pursuing their college life and dreams. My job description will be completely new and even though I will still be their mother, my hands-on will be so very different. My schedule will open up with more free time than I've ever had. 

This excites me and yet fear still fights for 1st place. I like new things and experiences, change usually doesn't scare me... Except now that Crohn's has invaded my body, it's slowly creeping into my mind changing the shape of every single day. It's filled me with an emotion I am not familiar with--Fear. What do you fight fear with?

I guess G can also stand for Goals. At the mention of this word, my mind hits a road block. Why? Am I scared? Yes, I think I am. I just have no idea where to start. It was so clear in 2011 but not now. Now, I'm stuck in this eternal black hole of pain. Could someone please throw me a rope? And maybe a map? Possibly a backpack full of direction and determination? I would be ever so grateful.

Monday, April 20, 2015

F is for Food

 F is for food.

I have a love-hate relationship with food right now.

I enjoy good food, doesn't everyone? But it does not treat me with the respect I feel I am warranted.

Well my body, specifically my small intestine (all I have left), sees food as the enemy. Meals are a ticking time bomb for me. It doesn't seem to matter what I eat either. If I put food in my mouth and swallow it, my stupid intestine is standing ready with full artillery to do battle. It starts to cramp about three-fourths of the way through a meal.

F also stands for a bad word that I try not use... key word: TRY. It's pretty difficult when the pain and cramping are at their worst. The F-bomb is just so cleansing when used correctly. It should be treated with respect and only used when absolutely necessary. This reserves it's power for when it is most needed.

Over the past few days, I've eaten rice (white) with almost every meal. Breakfast...Lunch...Dinner. It seems to be one of the least offensive grains to my cranky gut. I visited an acupuncturist in Sedona recently and she had some wonderful food advice for me. She told me to start the day with a rice porridge with ginger and a banana (banana benefits are pretty cool too) added to it.

My first attempt with rice porridge didn't turn out well. It was a liquidy-pasty-mush that I made in the crockpot and I added WAY too much ginger. FYI: Ground ginger from the spice rack is like a million times stronger than fresh ginger. I did not have fresh ginger so I improvised with the ground ginger. The recipe calls for one tablespoon of fresh grated ginger so without looking up a conversion chart (big mistake) I put in one teaspoon. Don't do this. The correct amount of one tablespoon of fresh ginger is one-eighth teaspoon. Ginger is an extremely strong tasting spice. Extremely strong, but oh so very beneficial. lists some of ginger's super powers. For me and my moody gut, ginger helps to improve absorption of essential nutrients and assists in reducing pain and inflammation like anti-inflammatory drugs.

I promptly pulled up Amazon and ordered a rice cooker. My next batch (done in above mentioned rice cooker) was much, much better. I used the correct measurement of ginger and also added some agave to it. I topped it off with a few slices of banana and a bit of almond/coconut milk.

Normally the texture of a banana will set off my gag reflex faster than sitting next to an air-sick person on a plane so I mashed the bananas into the porridge.

It was quite tasty! I might add some cinnamon next time. Cinnamon is full of good stuff for you as well.

I'm finding that red mean in any form seems to trigger a gut rebellion. Say goodbye to tacos... well, beef tacos anyway. I can make pretty good ground turkey tacos and burgers. I love a good steak (I'm a Texas girl ya know) but unless it is the most tender of all filet mignons and I chew until it is pure liquid, I can't eat it. I certainly can't eat it for dinner or it will keep me up all night.

Eating out poses multiple issues too. I can't even begin to tell you all the problems I have when downing fast food. I'm not exactly sure what is in fast food that can cripple me, all I know is it makes life almost unbearable sometimes. It might be better that I don't know what's in it... There are a few places I can go that offer items that  don't seem as vicious, Chick-fil-a is one if I stick to just the nuggets. Fast food bread/buns are full-on gut war instigators. Maybe it's the preservatives? You know those things have a shelf life of 200 years and would probably be the only food left after a nuclear bomb.

In addition to rice, I eat a lot of eggs. Usually scrambled and occasionally, I throw in some left over salmon and cheese.  Baked potatoes are another staple but I tire of them very quickly.

The closer to nature the food is the better for my gut; however, raw vegetables, fruit, seeds and nuts can make my life most difficult. I must steam the heck out of veggies if I want to eat them. A salad would most likely land me in the hospital at this point.

There are many days where the thought of food and the torture it likes to inflict leave me with only one option: a protein shake. I found some really tasty ones at Natural Grocers. Lately, I've been drinking one a day in addition to regular meals. My hair has been falling out like crazy from the trauma and lack of nutrition from the 43 days I spent hospital hopping. Every time I run my hands through it, 5-6 strands come away wrapped in my fingers. When I wash it, oh my gosh, I loose handfuls! So, if you see me out and about and wonder why my hair looks like I haven't washed it in 3 years, you will know why: I'm trying to go about 3 days between washes to hopefully conserve what hair I do have. Crohn's is really hard on my vanity.

Aloe Vera juice is also a daily regimen. I drink about 8 ounces everyday. George's brand has zero taste so I often add it to my water bottle. It helps soothe my tummy and gut when things get stirred up in there.

Isn't IBD (Inflammatory Bowel Disease) just nifty? It can seriously rob you of a part of life that is necessary and should be enjoyed. We often celebrate special events and occasions by eating. Family, friends and food always seem to go hand in hand. I used to savor a good glass of wine but that is a BIG no-no right now. Any kind of alcohol seems to be a hand grenade at this point. I hope this will change at some point but until then, I will stick with my aloe and water.
Scrambled eggs with salmon and a cup of joe for lunch.

Wednesday, April 15, 2015

E is for Empathy

E is for Empathy

Empathy: The ability to understand and share the feelings of another. 

Empathy is NOT the same thing as hypochondria. Hypochondria is the OBSESSION with the IDEA of having a serious but undiagnosed medical condition. Empathetic people actually have the ability to share in the emotional and physical pain of another person where as a hypochondriac believes he has a condition all his own. The two are easy to confuse if you don't know a person well enough.

My hubby's name should be listed along with the synonyms of empathy. He will take on my pain as his own more often than not. If I'm having a bad pain day and share this with him, he will go from happy-go-lucky to down in the dumps with physical and mental pain of his own in a matter of minutes. If you know him, you know this too. It's for reals man!

I see this as an incredible gift and at the same time I think it can be a curse too. When I was in the hospital, he was absolutely miserable for me. I am blessed because he totally gets what I'm going through, he understands, he feels it quite literally. This is also when I think his life might be easier with out this trait. I find that I try to protect him by not letting him know every time I feel bad. I want to protect him just as much as he wants to protect me. 

Sympathy and empathy are not the same thing either. Sympathy is having feelings of pity and sorrow for someone else's misfortune. It can also be defined as the understanding between people, a common feeling.  For example: 

Sympathy is a wonderful and important trait as well. It's often what we feel when someone we know loses a loved one or suffers loss of any kind. With out either of these characteristics, friendships would be very hard to maintain.