Sometimes it Takes Baby Steps

I've been fervently and repeatedly reminded over the past 8 days that rarely are our paths ever straight and that the best of intentions are just that, intentions.  No change comes from intentions alone.  We have to start small, plan even the baby steps, and hold ourselves accountable, so that we are putting our intent into action.

To say that I have been struggling over the past 8+ days would be explaining it mildly and cautiously.  I am not sure if it is my body, my mind, or my spirit needing rest or a combination of any/all or something else entirely but this "year" has already been a blur and I couldn't tell you what I have done so far because 1.) My mind is in a complete fog and 2.) It isn't much.  The daily tasks are a struggle, to the point of being nearly impossible to complete.  It's a feeling that I have experienced before but usually only after recovering from surgery or during and after an extremely rough flare... neither of which are currently in play.

I started this week with what I thought was a plan and by day one, I realized that it was all just intentions... a big TO DO list.  As the days passed, the TO DO list weighed on my heart and mind, adding to my unrest, but I just couldn't physically take the "step" to make an action plan.

It all let to my earlier stated reminder... The best of intentions are just that, intentions!  This morning I went back to the "drawing board" to break it down and plan out the steps.  Sure, there are times in life where "Just Do It" applies, but when you are struggling, it's okay to sit down, take a moment, and plan the baby steps.  I needed to hear that today, and if you are struggling also, I hope you take it to heart as well!!!

Until Next Time...



It Came in with a Bang

2016 definitely came in with a bang... and not the kind you would expect.  Our night at home was going along perfectly.  It was just the two of us sharing drinks, loading up on junk food, having the best 2 person dance party in our kitchen, and just talking... things that we rarely have time to do with the husband being gone so many hours of the day and our one day weekends spent catching up on projects around the house.  We thought we'd sit down and watch a movie since it was still so early and about an hour into it, I could feel my body tensing up.  It's a feeling I have felt way too many times in the past 4 years and was hoping it would stay right where it was and we could finish our evening but deep down I knew better.  By the end of the movie, my nerves were on full alert and my nausea was almost at full force.  I looked at my husband and said, "I'm getting a migraine, I have to go to bed now."

I've suffered from severe migraines now for about 4 years.  For about 2 years of the 4, I was getting them twice a week.  With the help of a neurologist, we got them down to once a week and finally after a year of trying different medications, once a month.  Back in September, I decided that I was done being loaded up on all these medications (that were starting to not consistently work) and that I wanted to start tapering off of them to see if the medications were actually even working anymore.  I read up on all the yuckiness of symptoms from tapering them off, got my prescriptions filled one last time and prepared for a rough month.  I ended up having to go out of town for a few weeks and realized that I didn't have enough medicine to fully step down and my doctor's office said that they needed to see me before they would refill my prescription again.  I was over 2,000 miles away, so that was not going to happen. So the crazy and frustration kicked in and I stopped "cold turkey".  Inside I was freaking out a little but I figured, I already suffer from migraines and Crohn's, it can't be much worse that either of those... and thank you God, other than feeling pretty off for a few days and some major dizziness, the transition went fairly well.  My body actually felt so much better not being on them.  My sleep wasn't based on taking something and praying for it to work... it felt weird realizing that I was actually sleeping better than I had been in a long, LONG time.  I was still having my daily morning headaches but no matter what we tried, that has been the norm for 4 years now.  Until NYE, (other than two "mild" and short lived migraines) it has been smooth sailing.

Let's just say that 2016 did not start like I'd hoped.  The shop stayed closed (even though I had plans to launch new merchandise), the lights stayed off, the bathroom stayed close, my water glass stayed full, the husband stayed quiet as a mouse (except to check on me), and after a failed attempt to get migraine medication down and broken blood vessels around both eyes from it getting lodged in my throat, I stayed in bed praying for even 30 minutes of sleep.  I've tried every natural remedy I've ever come across to get them to go away with no success and I tried almost all of them again yesterday to still no avail.  It took everything I had to not spend the day crying and to be honest, the only reason I didn't is because it would just have made my head hurt worse.  I wanted to be strong but I just couldn't find it within myself.  Here on the first day of the new year, I already felt defeated.  Completely out of my control, yet, I couldn't stop it from making me feel weak and broken.  It's crazy how much pain, of any kind, can consume you.  At midnight, I decided that I couldn't wait another 8 hours to try to take some medication again and I grinded up those darn pills and got them down.  The 2 year old on a Pixy Sticks sugar rush pounding on the drum set in my head has mellowed and he/she is currently lightly messing with the kick on the bass drum.  It's not over yet but I'll take it.  I don't feel human but I'm upright... and I'll gratefully take it.

It's good to remember that even though January 1st is the start of a new year, it doesn't decide what the rest of the year is going to look like.  Each day is a chance for a new start.  Some will be good, some will be bad, and some will be down right ugly, but the next day the sun still rises on a new beginning... and thank God for that!!!

Until next time...



Living with Intent in 2016

I've heard it so often lately, "2015 was a horrible year for me!"  I can't say that this was the case for our household as we saw so many blessings happen in our life but it definitely was a challenging year at times, to say the least.  Our year started out with my husband deciding that he wanted to go look at houses.  We'd discussed buying a house but never seriously.  I am a planner and I wasn't ready to plan for such a life changing event.  Not even 2 weeks into January though, I found myself riding along with my husband as we just "looked" at a house he had found listed online.  The next morning, without even doing any of the leg work, we made an offer.  By the end of the week, our offer had been accepted and exactly one month from the day we looked at it, it was ours.  I went from thinking we would never be in a place to be able to buy a house to God opening every door, including the door to our first real home as a married couple.  We spent the next month and a half commuting back and forth between our two houses that were almost 4 hours apart and me commuting 3-4.5 hours another direction for Remicade and iron infusions.  By the end of March, we were finally settled in our new home and the fun of home ownership began.

Some of you may not know, but we have horses.  We actually moved into this home with just our mare but as of this summer we now have 2.  We've added a 6 year old gelding to the mix and there was definitely an adjustment period for all.  He's like a 1000lb dog... fun, loving, and a major attention hog!!!  Our whole mentality about horses had to change and we spent (and are still spending) most of our time turning our property into the best possible place for them.  I thought life was expensive before but building fences, hay storage areas, stalls and the cost of feeding them during a year of drought was insane!!!  My perfectly planned budget completely went out the window!!!

Another thing that sent our budget out the window was that I decided in May to start my own business from home and Kindled Soul Designs was born.  I can honestly say that this has been one of the most challenging things that I have ever done.  It has completely taken me out of my comfort zone, taught me a lot about myself, has made me doubt my purpose more than a time or two, and has challenged me to decide what I want from life.  The hours are long, there are more unpaid hours worked than paid, and the balance between work and home life is nearly nonexistent. It definitely hasn't been what I expected it to be but I am crazy grateful for the journey and can't wait to see where 2016 takes it.

The other major challenge this year is still, surprise surprise, my heath. My health hasn't improved all that much this year either.  The move was great and getting out in the country has been good for me but stress is such a trigger in Crohn's.  There's actually a study out now that says that my stress might actually be triggered by my Crohn's and not the other way around... wouldn't that be "funny" if it pans out to be true.  I have started using essential oils and switching everything in my house to chemical free and it has been helping but we just can't find the root issue to get it into remission.  Also, after 3 years, my body decided to build antibodies to the Remicade and I had an allergic reaction after my last infusion.  We just recently started another medication that isn't usually used in Crohn's patients and are 3 weeks into the loading doses so we will see.  The hope isn't to be able to have this medication put me into remission but to have me tolerate it so we can stack it with another one.  To be honest,  I'm over it all again.  The side effects of this medication are by far the worst of any of the previous ones I have been on and could have a lasting effect on my future... but I guess when you're desperate, you'll do pretty much anything.  Okay, sorry to be a Debbie Downer... moving on.

It has been with these challenges this year that I decided on my focus for 2016.  (I don't think I have ever made a New Year's Resolution and probably won't ever but I completely encourage those of you who do.  There is nothing wrong with wanting to better yourself, even if you don't end up making it a "habit".)  My focus for 2016 is to live life with intent!!! The challenges are going to come and go, that's never going to change.  Some struggles are overcome but some never seem to go away, so there really isn't a point in letting them stop you from doing what you want to and should be doing. 

~ I want to be more intentional in my marriage.  I want to put it all away when the husband walks in my door and remind him daily how much I appreciate his role in our family.  He is gone for 12-16 hours a day and I want to focus on setting it all aside for few hours that I have with him a day. 

~ I want to be more intentional in my business, my focus, my follow through.  I want to build something that reflects who I am and I want to do it better than my mind tells me I can. 

~ I want to be intentional in my blogging.  I have a tendency to step away from things that I am not consistent with.  That's why I go long periods of time without blogging... if I know that I won't follow through with it, I don't make time for it.  My focus on what I have to say is going to change some in this next year so that I can really use it as a tool in my personal life and maybe as an outlet of my professional life.

~ I want to be intentional in the future I'm building, whether it be my health, our home, my journey.  The daily grind is not what I want.  Sure, daily tasks exist and I will continue to do them all, but I want to do them with intent.  I don't want to get to the end of the day and try and take a moment for myself.  I want to live in the moment.  Find the joy in all things... be grateful in all things... be prayerful in all things... be praising in all things.  I want to let those in around me and let go of those cause me hurt.  I want to take time for me intentionally.. not as a last resort and not at the end of the day when I'm too tired to hold my head up.  I want to live a purpose driven life.

~ Lastly, I want more intentional in my relationship with God and with other in my life.  I don't want the people that are in my life to just be apart of my life, I want them to be present in my life as much as possible.  I have a tendency to get caught up in my own little world and I don't want to... no matter how gorgeous it is here.  I want my home to be filled with as much laughter and love as possible this next year.  So (hint, hint) friends and family... get up here and share it with us.  My travelling days are getting more and more numbered and will continue to be as I transition all my health care to more local locations.

The husband and I are spending New Year's Eve at home tonight for the first time in the past 17-18 (can't remember which) NYEs that we've been spending them together.  It's a little different, but kind of perfect to ring it in with just my favorite person in the entire world.  Much love from us to you and I pray that you allow God to bless you abundantly in 2016!!!  Let me know what your plans for 2016 are.

Until Next Time...



When You Know It's Time to Speak Up

"If you think your little blog is going to help someone, then good for you."

Those are the words (in a sarcastic voice) that put a halt to my blog last fall.  They came from someone that I care about and also someone that I didn't think was even aware that I had a blog.  That one comment also brought a few things to my realization: one, that I was indeed being talked about behind my back (if my blogging was brought up); two, I had let myself care too much what another thought of me; and three, I needed to take some time to find my voice and direction again so that no one else's words would again be able to attach itself my soul.

Over this past year I have done a lot of de-cluttering in my life of anything that could bring me down or take away from my purposes in life.  I still have work to be done, I always will... it's part of being human (we're flawed).  Recently, I removed Facebook from my phone and iPad along with un-friending and un-following a few people.  I absolutely love seeing what my friends and family are up to, especially since I am still living three hours away, but I needed to get away from making checking it a thing I was doing out of habit (over and over again), getting my phone out of my hands, getting away from negativity, and feeling like I was giving more of my personal information away every time I was asked to update the app.  It's sad that we (I) use social media as a way to keep others "close" but especially for me, I cant stand to talk just to talk.  I know that may sound strange from someone with a blog but let me explain myself... When people talk to talk, it annoys me on a few levels: first, you can only talk so much before you start talking about others and eventually start gossiping; second, repetition, it's not fun to talk to someone when all you ever do is talk to the same person about the same thing over and over again; and third, I am more drawn to the story of something.  Don't just tell me that you work out every day, what you did today, what you got, what you want, that you are annoyed by this or that, that you hate life, that someone doesn't have to deal with what you have to, or your excuses; tell me why, what it does to you or how it makes you feel, how it makes you grow, how you want to overcome it or how it gives you hope or drives you.  I am interested in your story, your growth, your real struggle, your hopes, your goal, your purpose because those are the things that mean we are loving, growing, being compassionate, not comparing/judging, and LIVING!

In this journey of re-grounding myself to my purpose I recently came across this book Speak by Nish Weiseth. The front cover says it all, how your story can change the world.  I am SO excited to read it.  After only reading the Forward and Introduction, I knew I was finally ready to return to blogging.

Join me in this journey!  Let your story be heard!  Whether it be good or struggle, we can all grow, learn, change, find strength, and bond through each other's experiences.  Introduce yourself to me and tell me your story!!!

My Favorite Quote

Until Next Time...

Trying to Come Out of Hiding

I've already messed up!!!

I said that I would blog every Thursday but I'm pretty sure I just skipped the last 4... Oops!!!  This is where I struggle in maintaining my blog.  I dislike ever feeling like I am complaining and sometimes Crohn's is just so difficult that I feel if I share everything that is going on with me, then it will sound like I am complaining.  I lead such a blessed life that I have a hard time letting others into my daily life with an autoimmune disease.  So bear with me if I disappear for a few weeks or so, I'm probably just trying to convince myself to come out of hiding.

With that being said... antibiotics, fistulas, abscesses, and drama SUCK!!!  There, I said it!  No long, drawn out explanation needed!  Moving on now...

This summer has been so chaotic for me.  It was a good chaos, the social kind, but still hard to juggle when your friends and family live 3 hours away and you have to travel alone because your husband works a ton (yes, I understand it's a blessing).  It seems like I was only ever home for a few days at a time.  I was seriously looking forward to fall coming for some down time until I looked at my calendar today to realize that I am booked out heavily until sometime in October... and then the holidays hit! Another plus to all the chaos is that it gives me lots to blog about so I shouldn't be disappearing anytime soon :)

Here are some ideas that I am tossing around:

• The arrival of my niece Tegan (she's #10 in the niece/nephew department for us)
• All of my craft projects I'm working on and the debate of opening an Etsy shop
• My brainstorm of ideas to change the direction of my Crohn's treatment
• My organization obsession and my household binder that I am updating since my last one drowned while camping
• Anniversary Trip brainstorming
• My holiday crafting plans
• Crohn's Education
• The life of a hunter's wife during hunting season
• Our new truck (another thing my hard working husband was able to accomplish)
• and some more surprises that I'll share when the timing is right ;)

I'll leave you with these thoughts that have been on my mind all week:

 

 

 

 

Until next time...

 

I'm Truly a Work in Progress

I have been meaning to get back to blogging for a while now (obviously, considering my last post was 11 months ago).  My computer has many unpublished and unfinished drafts but nothing I felt was complete enough to hit the "publish" button.  It's been the story of my life.  It's amazing how life passes us by when we accept the cards life deals us instead of trying to make something out of them.  It took me way to long to say "no more."  Don't get me wrong, I'm human and that doesn't mean that I won't go wandering that direction again but I refuse to sit there.

Not much has changed, but again, I guess that is what happens when you become complacent.  There are days when I say "let's do this" and then the next day I feel fortunate enough to get out of bed.  It's a crazy way to live life but I am grateful to have each day be a new day!!!  It is all about taking life day by day anyway... right?!?!

So here's the plan (that I told myself I would start 3 months ago)... I will be blogging at least every Thursday.  I set myself up a weekly schedule and my blog is the only thing that I am ignoring.  I think that for now until I get into a routine that I am going to be letting you all into my personal life a little more so that I get myself on a schedule and not just wait until I have something Crohn's related to share.  As I have said before, my disease is a part of me, but NOT who I am!!!

So here are a few pictures to get started:

I turned 32 this year and celebrated it with the love of my life!

We very casually celebrated our 4th year of marriage and 15 years of being together!

We started home brewing (for the hubby of course)!

Got in a much needed Girls' Weekend with my old co-workers!

Spending every last minute I can with my cutie pie nephew Jonah!

Had these cuties up to our house for a week!

... and like the crazy Auntie I am, I took them all to the zoo!

 

 

Has It Already Been a Year?!?!

It's crazy to think that it's been over a year since my last post!!!  There are SO many changes in my life since my last post that I'll try and sum it up as quickly as possible so I can move on to life as I know it today... there still so much going on!

2011

* Had setons removed because my body seemed to be healing.
* Aug 15th, I was admitted to the hospital for yet another abscess drainage and spent my mother's birthday having surgery.  As a result, we stopped the Humira injections because they were obviously not working to stop the fistulas and abscesses.
* Returned to the hospital again on October 25th and spent my sister's birthday having surgery for ANOTHER fistula and abscess drainage.
* Less than a month later on November 16th, I was back for my 3rd surgery in 4 months and my fourth for 2011... and again for the same reasons.

I returned back to work after each surgery as soon as I thought I could... but definitely didn't take the time that I should have.  Call it being stubborn, a Taurus, my mother's child... I am all of the aforementioned. I mostly did it because I felt like I was a burden to my co-workers.  My body was exhausted and was not getting enough time to heal in between attacks even without returning to work. It was a ROUGH and EMOTIONAL time for me!!!

My husband, doctors, and I decided that we should give the Humira another try but decided that this time we would change my injections to once a week instead of two injections every two weeks.  Same amount of medication but more frequent injections.

2012

* January/February - Said "See you later" to some of my best friends from work due to position eliminations, retirements, and new jobs.  The hubby also moved 3 hours away from me to take a new job.
* March - Humira seemed to stop working as well again.  By the end of the month I was having full blown reactions to the injections (it looked as if baseballs were trying to come out of my skin!!!).  That was the end of my Humira injections.
* April - Started the month off right by taking a week off to spend up north with my husband, celebrating our 3rd wedding anniversary and 14 years of being together.  Much needed!!! The day before I returned to work we started the loading doses for Remicade and I started packing to move out of our apartment to parts unknown.  By the end of the month it was clear that I needed to focus on myself and be close to my husband.  The day that I decided to give my notice, I was actually called into the office to be told that my position was eliminated.  That night I turned in my keys to our apartment and closed the chapter of our lives in Vancouver.
* May - Moved 3 hours away from my family to join my husband in the 2 family home he was renting with his brother and his family but returning every few weeks for my iron infusions and Remicade doses.
* June - Was blessed with the birth of a new nephew but also lost my grandmother to cancer.  Her passing was one of the hardest things that I have ever had to endure... even through my Crohn's battles.  My grandfather told me at her graveside service that she left me all of her strength to help me get through this and trust me, when I am down, I remember those words!!!
* July - Enjoying life but my health is not getting better.  Spent most of the month in A LOT of pain.  Finished my loading doses for the Remicade but already not seeing the results that we'd hoped for.

And here we are all the way to August...  I welcomed another nephew, this one from my own sister :)  Also, visited my GI doctor who agreed that our results are not what she'd hoped for as well and would like to run tests to see if I have enough Remicade running through my system.  She also started me on another medication called Imuran along with the Remicade to see if we can hit this harder.  I took my first dose tonight... but that's a whole other post that I'll have to save for tomorrow :)

Speaking with a purpose... or so I'd like to think (the introduction)

The new year has started and blogging has been on my mind a lot already.  It's not that I think about people actually reading my thoughts but writing has always been a way for me to SEE my own thoughts... a way for me to look at it from an other's perspective in a way.  Writing makes for a more thorough thought process as to what I'm attempting to say and/or a way to look at a situation and say, "Really, maybe you were overreacting just a little?!?!"

With that being said, they are just that, my thoughts, and those of no one else.  They are not up for judgement nor meant as judgement... however, a healthy discussion about one's thoughts never hurt anyone.

Expect me to be brutally honest; I always am.  My husband often says, " Can't you lie just a little."... To which my answer is always an absolute, "NO!!!"  My goal is to be thoughtful and tactful, but more often than not, it just needs to be said how it is.  Being cruel isn't who I am nor what I'm actually even talking about here...  because when you live with a life-long, never going away (unless God decides to heal me), nasty, and sometimes debilitating disease such as Crohn's... honesty is the only policy.

Me and My Purpose (as I know it thus far):

*  I am just 3 1/2 months away from the big 3-0 (and could care less)
*  I have been married for almost 2 years but we've been together for almost 13
*  My family is my everything and they give me so much joy.  I do everything I possibly can for and with them.
*  I graduated from college with a degree in Elementary Education and I use my degree everyday but have never taught in a classroom of my own.
*  I was diagnosed with Ulcerative Colitis at 15 and Crohn's at 20 but they say it's almost impossible that I had one and now have the other but I've never had any symptoms that belonged to the other while under  each diagnosis.
*  Crohn's is a big part of who I've become but doesn't define me nor own me (even when it's at it's worse).
*  I want children but haven't quite decided whether I'm willing to medicate myself for the rest of my life just  to have them on my own.
*  I'm still trying to find my place in life by giving more of myself to God so he can show me my real path.
*  Music stirs my heart.  It's a window to one's soul.  Is it any wonder I'm married to a musician?!?!
*  Caring for others is my passion... I always put others before myself and sometimes I have to be reminded that we're all ultimately responsible for our own selves and decisions.
*  I'm a lover and a fighter but not at the cost of someone else's happiness.

And lastly for the moment...  I'm stronger today than yesterday and that alone is enough to get me through!!!

I hope you enjoy the read and I would love your feedback and/or suggestions...