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 ...

I'm back in my fighting stance! I think anyway... I'm learning how to stand on my own after 24 years of marriage. When a long term relationship ends it really messes with your head. You wonder: What's wrong with me?  Why is this happening?  What happened to happily ever after?  You feel: Brokenhearted Hopeless Confused Angry You want to: Crawl up in a ball under the covers in the safety of your bed. Lash out. Sit and watch mind numbing TV. But because you are an adult you have to function in the real world and find a new path. So here I am, adulting on my own. While married, my future seemed secure and mapped out. Finances, retirement, daily routine... As a single person, things are different. My divorce left me financially stable thankfully and this post is not bashing him in any way, I'm just trying to figure out what my new future will look like. I want to be able to add to my finances but with a chronic illness and it's unpredictabili...

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...

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...

 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'm still mad. Crohn's still sucks. I'm still in pain. My attitude rivals that of a newly awakened hibernating bear. All teeth and claws. Is it bad that all I want to do is curl up with my Bubba dog and pretend the world doesn't exist? That's where I'm at right now. The stupid weather can't make up it's mind. One day it's a gorgeous 73 degrees and the next it's arctic living at it's worst. I wore flip flops yesterday and today, Uggs because there is snow blowing sideways. I've stopped watching the weather because it does nothing but piss me off. If I follow the forecasts then I start to anticipate the pain I will be in which makes me feel like a total hypochondriac. My body is enough of a radar on it's own. I can feel a change coming as early as 2 days before it arrives. Every joint in me is screaming, "MOVE TO A TROPICAL CLIMATE!" I was telling some friends yesterday just how badly my attitude stinks. I want t...

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...