for what it's worth

This month has been filled with lots not so OK days. I've struggled with chronic pain, achy joints, abdominal cramping, nausea and extreme fatigue. Here's an example of my not so OK day today: Struggled with insomnia last night so I got about 5 hours of sleep total but not all at once. Tummy cramps and nausea awoke me this morning. I lay in bed for about 30 minutes willing myself to get up but afraid the nausea might win. Took the handful of prescribed meds, vitamins and minerals needed to make my body function. Also added anti-cramping and nausea meds to the cocktail (not pictured). Ate a small gut friendly breakfast (not because I'm hungry--trust me, I'm not--but because the meds need it) and my 1 cup of coffee (more than 1 cup = more cramping + nausea). Sat in my comfy chair and caught up on social media and reviewed today's TO DO list to figure out what MUST be done today and what can be postponed. This may seem a bit lazy to most however, it is ...

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 ...

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 mayb...

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 posit...

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 ...

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 an...

 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 somewher...

 I don't feel brave. Not at all. People are always telling me how brave I am in dealing with all this IBD/Crohn's crap. It's not that I'm brave, I just don't have a choice. I am alive and until God decides differently I will push through this misery to be the best I can, to make the most of each day. By definition, I guess you could use the term brave loosely. I know I face pain and "unpleasant conditions" everyday and this is most likely the outlook for every single day in the near future but I don't feel brave  when I get up in the morning. I feel tired. I feel heavy. I feel determined but not brave. Determined to make it through today. Determined to keep my mind in check. Determined to move forward but not brave. Mostly I feel afraid. Afraid I won't be able to control the pain. Afraid the meds won't work to control the disease. I feel afraid because there is no cure for Crohn's and so I won't look too far ahead for fe...

My cousin emailed me a couple of weeks ago challenging me to participate in April's  A to Z Blog Challenge . I like it but I'm not always regular with my blogging. I blog for fun and stress relief so putting a deadline or strict timeline parameters on me takes the fun and most importantly, the therapeutic release away from it. I will lose interest super fast and begin to stress over it which totally defeats the purpose of why I blog.  I decided to follow the guidelines on my own time instead and even though it's March 25th,  I'm doing my 1st post in my own A-Z Challenge. A is for Acceptance January 29, 2015: official Crohn's disease diagnosis. Week 8 as a Crohnie: Anger slowly being replaced with acceptance. I know I really don't have a choice in the matter of accepting the fact that I have Crohn's and staying angry will be very destructive in the long run. Yes, it's natural to be upset, it's part of the grieving process after all. The p...

Hello Prednisone. I wish I could say I was happy to see you again. I really thought you were gone from my life for good. December 18, 2014 is the date of my twisted bowel surgery. January 30, 2015 is the release date of my last (of 4) hospital stays. March 10, 2015 is the date I went to see my GI because I needed a 3rd refill of Hydrocodone 10-325. I am still having a lot of pain and I guess not all of it is surgery related, it's Crohn's related. I am averaging 2-4 pills a day plus 1-3 doses of Bentyl, an antispasmodic for the digestive system.  I was taking Entocort, a steroid designed specifically for the gut that doesn't have the typical steroid side effects like moon face, roid rage and weight gain but it just wasn't up to the task of my stubborn gut I guess. Doc decided I need a low dosage of Prednisone for a month or so and prescribed 10mg daily. As he examined me, he listed all the benefits of prednisone for a few weeks: quicker healing, pain management, gettin...

I came across this profound quote today as I was mindlessly skimming  Pinterest  and it took my breath away. That's me! I actually said this out loud to the dogs curled peacefully at my feet. Yesterday was Humira Starter Dose Day. I administered 4 shots via a push button pen into the fleshy part of my legs. The starter dose is 4 injections which burned like mad. The process was as simple as promised but the burning sensation of the medicine was a bit surprising. I had heard it burns a little but dang, after 4 shots that "little" burn was quite big. Once I get past the series of 2 shots I will go to 1 every 2 weeks. I can handle the burn of 1 injection every 2 weeks if it's working! I'm hoping and praying this is a miracle worker for me. I'm ready to feel good again. This week marks 6 weeks from my surgery. My new stoma (Lilly II) is doing her job very well. She is actually prettier than her predecessor, sorry Lilly I. Lilly stands for lil' illy or li...

I'm not having a very good day. Despite sleeping well I woke up tired. Damn autoimmune crap. ---See that's not a good sign, cuss words before 10am... Well, I better get my act together because I'm hosting Bible study in less than 2 hours. Addiction paraphernalia: Bday gift from Thomas, a chalkboard mug :) Today's plan: wait around house for starter dose of Humira to be delivered. I'm feeling very anxious about this new medicine, of course it could be the cup(s) of coffee I am consuming. Some people turn to alcohol, I turn to coffee. I'm nervous that Humira won't work. I'm hoping and praying like mad that it's the miracle drug my doc say it is. I'm scared of never getting out of this flare. I haven't flared in over 3 years now and I forgot how awful it is. How it affects the entire body. This morning I ran my hand through my hair when I got up and ended up with a handful of loose hair. Great, that's just wonderful. I'm going...

I just returned home from yet another hospital stay. This time I chose Scott & White Hospital in Temple, Texas to check out their ER and all their available testing equipment. I figure I've already met my insurance deductible this year, might as well have some fun. On January 22nd I checked in with all the usual symptoms of dehydration, vomiting and diarrhea. My in-laws are very active with S&W through their board and various charitable organizations and were instrumental in helping us get the best care possible there. I will forever be grateful for their help. S&W hooked me up with a team of no less than 5 GI's and consults from the head of the GI department. All were wonderful guys with great bedside manners and a thirst to find what was slowly trying to kill me. I do have to say this though--several looked to be about the same age as my kids... I'm not sure one could even really shave yet. Is this because I am staring 42 in the face? Will I be that "...

Hey! Guess what, this week (December 1-7) is all about IBD (Inflammatory Bowel Disease) and since I kinda have some experience and knowledge in this area, I'm gonna tell ya all about it. :) IBD is very different from IBS (Irritable Bowel Syndrome). IBS is a very real condition and can be quite miserable itself. This is an excerpt from CCFA  (Crohn's & Colitis Foundation of America) explaining the two and how they differ. Many people are confused about two distinct gastrointestinal disorders -- IBD and IBS. Different intestinal disorders can produce similar symptoms.  Irritable bowel syndrome  (IBS) is a condition that produces some symptoms similar to those of  inflammatory bowel disease  (IBD), but they are not the same condition, and they involve very different treatments. Therefore, getting an accurate diagnosis is essential to managing your condition properly. The following Q&A will give you an overview of IBS and how it differs from IBD....