Tuesday, May 19, 2015

I is for Inflammatory



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


IBD:
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. Lifehack.org 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. 






Monday, April 13, 2015

D is for Determined


D is for Determined

Determined: Having made a firm decision and being resolved not to change it; processing or displaying resolve.

*Resolute * PURPOSEFUL * Purposive * Single-minded * Unswerving * Unwavering* 
*Undaunted * Intent * Insistent * Steadfast * Staunch * Stalwart * PERSEVERING * Persistent*
*Indefatigable * Tenacious * Strong-willed * UNSHAKABLE * Strong-minded * Steely*
*Dedicated * Committed*


 Determination is a quality I've had to develop over years of living with chronic illness. It's possibly one of the hardest things I've ever had to do. Well maybe it's in 2nd place to parenting...

Determination doesn't come naturally to me. There have been so many days where giving up looked really good and so much easier.

I mean REALLY good and SO MUCH easier.

So good that I made an exit strategy on a particularly bad pain day.

So easy that it's options are quite limitless.

I wrote it down with great detail in my journal and when I went back a read it, it scared the crap out of me.

I am at peace about dying. It doesn't scare me. I'm not afraid of what comes after, in fact, I think it's going to be absolutely amazing. When I reach those pearly gates and streets of gold, I am going to dance and sing all the way to the throne of God. I'm going to jump in His lap and hug His neck and tell Him how much I've longed for this very moment. I can only imagine what it will be like to be fully restored in His presence.

BUT, I can wait until He calls me to Him.

I cannot put suicide in my list of options. If for nothing else, the pain and grief it would cause my family. I feel like I must have some purpose to have survived some of the life threatening moments in my history.  I just need to figure out what that is exactly.

You'd think at 42 I would have some idea of what I want to do/be as a grown-up. I've been playing with the notion of a vision board, a tangible reminder of what I want to accomplish. Something that helps me focus when having a bad day. Something that says "YOU CAN DO IT!"

Now that the anger of the Crohn's diagnosis has dissipated some, I am working on what my "new normal" will entail. I refuse to let go of our dream of traveling all over the world when the last kid heads to college. We married young and then had a baby almost 2 years later while we were just poor college kids trying to survive. We are finally in a place financially to make those long ago dreams come true and I will not allow Crohn's to mess that up.

So what does this new chapter look like? Honestly, I haven't a clue. I'm just trying to make it one day at a time.

In my efforts to make the most of each day I have a little routine every morning:

  1. Rise and shine somewhere between 7 & 8 every morning regardless of how little sleep I had the night before. Sometimes I get a full 8 hours but mostly it's somewhere between 4 & 6 due to pain. My goal is that I will be ready for bed at a decent hour (before midnight) if I suck it up and get moving after a bad night. 
  2. Eat breakfast and drink coffee while having some personal quiet time. I use this time to read, journal, pray or just meditate. I find this gives me a chance to wake up and bring my mind to a healthy place before the insanity of a busy day hits. 
  3. I take my morning meds which consists of 1/2 hydrocodone 10-325 and a bentyl to help decrease the abdominal pain and cramping I have every morning. If I do this and get the pain managed, my day is 100x better. I've tried not taking 1 or both of these and it just makes for a rough day. So, for now, this is how it goes. 
  4. I run my essential oil diffuser with a blend of various oils depending on what I'm feeling at the moment. I'm a believer in aromatherapy and it's benefits. My oldest son told me it's just a mental game I'm playing but I don't care, it works for me. Besides, he's young and healthy what's he know? ;) (He's actually waaaaay smarter than me.)
I'm also working on being thankful. No matter what the day brings there is always something to be thankful for. When I point my mind in this direction I realize that ALL of my basic needs are fully and completely met. I am clothed, fed, and sheltered. Anything beyond those is icing on the cake.
  • I am loved by an amazing man--icing. 
  • I am the mother of 2 awesome boys--icing. 
  • I have a loving family and in-laws--icing.
  • I have too many friends to keep count of--icing. 
  • I have a working car that is far beyond my needs--icing.
  • I have a plethora of shoes--double layer of icing.
Do you see what I mean? When I am feeling sorry for myself, I just need to take a minute to realize that I have it pretty darn good. This gives me the strength, the will, the determination to make every moment count. To be my best self. And when I fail at that, I pick myself up and try again. I refuse to be my own worst enemy. 



I used to ask my kids "Is it true?" when they would be upset because of some derogatory comment someone said about them. They'd think about it for a minute and then answer "no, it's not true" to which I would reply "tell me, what is true then." They would go on to list positive attributes of themselves like "I am nice, considerate, fun, smart, etc..." I decided this is an exercise I must do with myself now. I can no longer allow Crohn's to tell me who I am. 
  • I cannot believe the lies it tells me. 
  • I cannot be bound by the ropes it tries to tie me up with. 
  • I will not allow Crohn's to crush my spirit.
  • Or dictate my future.
I will deal with this disease, I will take care of myself and I will persevere. I may have to take the occasional detour or sit out a game or two but I will live my life to it's fullest. I am determined.











Tuesday, April 7, 2015

C is for Chronic

 C is for Chronic 

Chronic: 1) constant, habitual
              2) continuing a long time or recurring frequently

Crohn's falls in the category of autoimmune chronic illness. It has chronic pain, chronic inflammation, chronic diarrhea, chronic ulceration, chronic depression, etc...

Every morning when I get out of bed I spend the first 30 minutes (at least) trying to get my abdominal pain under control. The rest of the day is spent trying to maintain that control while also trying to function as close to normal as possible. I don't tell you this so you will feel sorry for me, I want to share why I am not always on top of my game. 

It takes a great deal of mental strength to deal with the level of pain Crohn's brings. Here are some of the characteristics you might see in me when I am dealing with pain above a 4 or 5 on the pain scale the medical community likes to use (0= no pain to 10=worst pain ever). I live somewhere around the 3-4 zone on good days. 

1) I am very quiet. I probably won't start conversation as most of my energy is being used to deal with pain. I may come across as angry or pouty and possibly even short tempered. It has nothing to do with you and everything to do with the level of pain I'm in at that moment. I try not to leave the house and I try to limit my interactions with people who may not understand the extent of my condition. 

2) I might have a grimace or frown on my face, a knitted brow, clinched jaw. I may rock or jiggle my legs, wring my hands or seem a bit stir crazy. This is because intense pain is hard to ignore and not easy to sit still during. For some reason, rocking has a calming effect for me so this is something I do quite often. 

3) I'm not mentally sharp on high pain days. My mind becomes cloudy due to the pain which keeps me from thinking straight, making good choices or even simple decisions. Pain meds do not help this as they dim my brain function too. I might have problems carrying on conversations, answering simple questions, replying in a timely manor. You may see me staring into space or possibly looking a little lost. I may not see you or register that you are trying to get my attention if I'm somewhere like the grocery store. It takes an immense amount of concentration for me to complete a task like that on a bad day. It wouldn't be unusual for me to walk right by you and not realize it or to look directly at you but not register who you are. 

4) I have a super hard time putting my feelings into words as it is so when you add pain to that, I can sound like a real goofball. Words that I want to use don't always compute from my brain to my mouth. Many times I will mix up words or my sentences may be dis jointed and choppy. You might wonder what I'm smoking...which is nothing but I've probably taken a narcotic of some sort. 

5) It's quite possible that I will have the appearance of being fine, even healthy. On bad days that I must function I am more likely to be a little more dressed up. This will sometimes help me to feel better if I can look in the mirror and not see a total mess. My eyes will give it away easily though. I will probably tell you I'm doing fine because to tell the truth would cause me to break down. Plus, I just hate talking about it. There are times I will but I try with all my might to focus on things that are positive. 

6) The slightest thing might bring me to tears. I absolutely hate when this happens which just compounds the moment of ridiculousness so then I'm in tears and pissed. 

7) ALL small things become big complicated deals in my head when my pain level is high. I try to steer away from major decisions of any kind if at all possible. 

8) Pain is all consuming and completely exhausting. I might sleep on and off all day long and still be ready for bed by 7pm. Or I might not sleep at all because the pain won't let me relax. Add insomnia to the mix and things can go from bad to worse very quickly. 

9) You might get tired of me canceling plans or making excuses or even when my hubby does the same to protect me. I'm sorry for this, it's just how it goes some days. You might be frustrated because I won't comit to anything further out than a few days. I never know what each day brings until I wake up. 

10) I struggle with a lot more than just the pain on bad days. I am also battling depression, guilt, sadness, fear, anxiety, exhaustion, and even self pity. People with chronic illness and pain often feel like they are burdens to the loved ones in their lives. I know my hubby, parents, kids and friends often pick up my slack, run interference and generally protect me. I love and hate this. Mostly hate but I feel immensely blessed that they care enough to walk this road and help carry this burden. I wish they never had to though.