Sometimes it's Just One of Those Times

Picking a new team is scarier than scary. It's awesome though that my current Doctors are handpicking their replacements. (Yes, I still have not changed doctors since I moved almost 4 years ago; I just commute.) Look at me, sounding like we're putting together some elite task force, but what can I say, having the right people in place is essential for getting successful results... and as of right now, I need some good results.
I am currently and hopefully on the tail end of another migraine. The second in two and a half weeks, after not have one in months. I don't know if it is medication related but I cannot go back to dealing with these on a regular basis. Three days straight of intense pain and nausea, never knowing when the next will hit, is not living. It seriously zaps every ounce of positivity from my body... Not acceptable!!!
Which makes this so not the blog post that I've been mulling over for the past few days. I had every intention of posting a light-hearted, jab at myself over becoming a hermit since we moved and how much I actually enjoy life from my little piece of heaven.  I'm sure I'll feel like it soon enough. Sooner than later, I hope. 
Despite some strange medical issues, these last few weeks have been laying the foundation for a great 2016 in my business and personal life... I just need to figure out how to tackle the latest hurdle... Quickly!!!
I'm determined to make this my year of getting control over this. There is no other option!!!

Until Next Time...

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...



Thunderstorms and Clear Blue Skies

Oh my goodness, I'm actually sitting down and using our computer!  It almost feels like a miracle... to be actually sitting down and also to be typing on something that doesn't fit in the palm of my hands!  It has be a CRAZY past 5 1/2 months!!!  It was a super dark time filled with one thunderstorm after another and I am so thankful to be looking at the clear blue skies ahead!!!

The end of October I got sick, really sick.  I blogged about it so I won't go into too much detail but let's just say it got worse, a lot worse.  By the middle of December I couldn't handle the pain any more and was pretty much bed ridden. On December 17th I ended up having a procedure done to figure out what was going on inside and to alleviate some of my pain.  Let's just say that it did more harm than good...  Immediate after coming out of recovery, I could tell that my speech was slurred and that my tongue felt funny but the nurses thought that I'd bit my tongue and that the breathing tube might have scratched the top of my throat as it was being taken out.  I was still pretty groggy from coming out of the anesthesia so I really didn't know what was what.  When I got back to my parents' house, I was still slurring all my words so I was showing them where I bit my tongue and my dad gave me a funny look and said, "I think something is wrong, your tongue is crooked!"  So I looked and this is what it looked like...

After it wasn't any better the next day and my speech was the same, I called my surgeon and he sent me straight to the emergency room to be checked out to make sure that I hadn't had a stroke while I was under sedation.  I was diagnosed with Unilateral Hypoglossal Nerve Palsy.  It means that there was damage to my 12th nerve from the breathing tube during surgery.  There has only been 5 other reported cases of this happening ever, so I was like the freak in Room 12.  I was visited by every ER nurse and doctor and some even came over from the rest of the hospital to take a look.  I also learned that it could be permanent and that only one case had a fully recovery (after 5 months of therapy).  Thank God though my speech improved after 2 weeks!!! My tongue is still crooked but not nearly as bad.  My neurologist can't find any damage to any other area that the 12th nerve controls so I will take that as a blessing!!! 

The reason we did the procedure in the first place didn't pan out either.  The pain and the flare just wouldn't go away and I was continuing to lose weight like crazy!!!  By the middle of January, I was down 18 pounds and on a small framed girl like me, there isn't many places the weight can come from!  I felt like I didn't know who I was any more.  My life felt SO out of control and to top it off, my husband's job was coming to an end and we had to figure out where to go next.  And then BOOM... without any preparation or putting any extra money aside, my husband decided that we were going to buy a house!!!  He literally said it, he found a house he liked, we contacted a real estate agent, she showed us the house a few days later, we came home and got financing, put in an offer, and closed exactly one month after the day we looked at the house... it was one of the quickest closings that I'd ever seen!!!  But oh my goodness, was it stressful on me (especially since I had no clue what to expect)!  Trying to read and sign everything, and communicate with a real estate agent, a loan officer and your spouse (who wanted me to be the one to handle everything) while you are in so much pain, weak, and suffering from the most severe and constant migraines of my life had me living in a dark room and only getting up to find the next piece of information they needed or to go throw up whatever small amount of food I had managed to get down!

Once it was all over though, I had one last storm to get through... the actual moving and commuting between the 2 houses.  We weren't expecting to find something so soon and close so quickly so I ended up packing the house after we signed and we rented a uhaul the same weekend and moved the majority of our stuff to our new house... 4 hours away from the current one we were living in!!!  It was crazy! We spend Valentine's Day moving and returned the next day.  For the next month, I commuted back and forth between both houses weekly and we had so many extra trips to get the rest of our stuff because my husband was living at the old house while I was living at the new one.  Finally in mid-March, my husband got his lay-off and we were officially both in our new house!!!  

We have been crazy busy! The house is small but perfect for the two of us but there are many projects ahead to make it our own!  So far we've gotten a new refrigerator and a washer and dryer.  So happy to not be using our TINY refrigerator any more and not to look at it after my husband put it down on top of my foot... I'll save you the gory pictures of that one (my foot is still bruised and messed up but at least it isn't broken).  We've also started on our project list.  My husband is AMAZING and can build anything I ask and never stops working so we make the perfect team... I design and he makes it come to life.  He's already built me shelving in the linen closet, made me a new custom closet, and built shelving in our laundry room/pantry.  I'll post all those later as we finish things up but for now, I'll leave you some pictures of the view!  It's literally heaven on earth here!!!

One side of our house faces Whitehorse Mountain!

These are the mountains on the other side of the house!

And this is the view from my living room window!!!

See why I'm in love!!!

... and one more because it's just so dang gorgeous!!!

Enjoy your Easter/Resurrection Sunday!!! 

Until next time...

Living in a Constant State of Being "Not Out of the Woods Yet"

I haven't written about Crohn's in a while because part of the battle of dealing with a chronic illness is that it can kind of be depressing and people sometimes don't understand that you may need to talk about it and it's not because you're trying to complain or get sympathy. It's hard and some days are REALLY hard and after a few weeks of only days that are hard and really hard, it's time to talk about it. Like it or not, that's where I am at tonight.

A few months ago my gastroenterologist decided that labs were coming back great and I hadn't been admitted to the hospital in a while but my Crohn's was still showing no signs of going into remission. We had my Remicade infusions on an every 8 week schedule but I was still going into a full flare by week 6 until about a week after each infusion (essentially still spending almost half of my time in full flare mode). The only thing that keeps me out of the hospital at this point is that I rarely heal from one fistula to the next so my tissue has no time to repair before it's ripped apart again and due to that lack of strength and healing time, that breakdown is doing part of the job my surgeon would be doing if I went in. My gastroenterologist thought we should get a little more aggressive with the Remicade and change me to an every 6 week schedule.

In September I had my first infusion at the 6 week mark and wouldn't you know it, I was doing great and then flared at the 4 week mark (again, like before, 2 weeks before my infusion). I was shocked but thought maybe my body was just off and after my next Remicade, I'd start to feel better again. I had my 2nd infusion on the new 6 week rotation 4 weeks ago now but I never got any relief. I've essentially been in between hard and really hard days for 6 straight weeks now with the last 2.5 being nothing short of torturous on my body. The last 3 days have had me praying like a mad woman and the husband and I going back and forth on whether it was time to make the long drive to the hospital. On Sunday night I looked at him and said, I think I'm down for the count. He asked if that meant I was ready to go and I asked for 2 more days. He said, I just wish there was something I could do for you and I thought about it (wishing there was something too) for a minute and responded, you could come pray with me. My husband looks hard at me, immediately turns off the tv, and comes and sits down on the couch where I'm laying, grabs my hands, and starts to pray, hard! Yes, I'm seriously blessed by him and will never forget that I am married to a very special man!!! I don't know the reason for my struggles but I never doubt God has a plan for them.

Since Sunday night, I have been "down for the count" with a few moments of short lived attempts to throw in a load of laundry or make food and read about a hundred random texts from my husband while he's at work making sure that I'm "relaxing" or  "resting" (both in quotations because they are nearly impossible when you are in pain). The pain has been increasing at a steady rate with tonight bringing me to a point where I almost asked my husband to come home. I decided to play doctor on myself (I'll spare you all the details) and have finally got some of the pressure of one of the abscessing fistulas to release but I'm definitely 'not out if the woods yet." With that being said, I'm sort of laying/sitting on a heating pad right now so the heat can draw more of these nasty "toxins" out of my body so the swelling can go down, I can get some healing going on in this "broken" body, get some strength back, get my booty out of bed, and get back to life as I know it.

Any extra prayers you can send up would be amazing and much appreciated and I'll leave you with a few quotes, which have seem to become my norm here :)

Never forget what you are going though always has something for you to learn.

Let your struggle make you stronger

and share what you've learned!!!

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...

A Love Worth Crafting For

I'm pretty good at avoiding the temptation of those little white bins that line the check out at Michael's because even though they may only be a $1, my bill is always at least 100 times that amount (if I'm lucky) but this particular time I saw something I couldn't resist. I already had a project in mind but wasn't sure on the colors I'd need, so I scooped up two of each pattern and off we went.
 

 

As it turns out, I needed something gray, not black, for my project but my sister looked at me and said, "They do match MY bedroom."  Big sister took the hint and my wheels started turning again for project ideas. The patterns were perfect for her black and white bedroom but I wanted to come up with something not so cheesy but personalized since her and my BIL don't really have anything personalized up on their walls.  Then it hit me... this year they would be celebrating their 10th wedding anniversary.  I could throw a little of the typical cheesy in for that occasion ;)

Marriage is such an amazing thing but anyone who has made that life-long commitment knows that it is work!!! I've heard people say that marriage shouldn't be work because work is hard and if you are with the right person, it shouldn't be hard.  Well, thank you for your opinion but I call bull on that one.  You don't have a houseplant, never water it, and wonder why it died.  You water and nurture it because you want it to grow and bloom.  When it starts to droop, you figure out why and adjust what you are doing.  It can be challenging at times and the work it takes is constant but it's a labor of love, just like marriage :)

So yesterday I sat down with a few hours on my hands to knock this project out.  Giving into the "cheesy", I selected the word LOVE and decided to personalize it with EST 2003 (the year they were married).  This is one of the reasons that I love having a Cricut and using the Cricut Craft Room.  I just searched through my cartridges until I found my perfect font and planned it all out where I could see what it would look like before I cut my paper.



 

Then I sent my images to the Cricut

 

 

Using some paper on paper Mod Podge, I glued my letters to their shadows.

 

 

... and let them dry.  Aren't they cute?!?!

 

Then I used Aleene's Platinum Bond 7800 All Purpose Adhesive to glue the letters to the glass tiles. Let it dry according to the directions and it's done!

 

 

The only thing left is to put on something to hang them with but I thought it would be a good idea to let my sister decide that part.

 

 

 

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...

 

Self Induced Chaos

It's taken me all day to decide what to write for well, two reasons.  One, because I am always inspired by the title and two, well, I am a procrastinator (I can admit it).  When I was younger, I was your typical procrastinator, to the extreme that I waited until the night before my science project was due to tell my parents about it (and that I was supposed to be doing it with a friend and we needed to go to the craft store... it was the best one in class though)!!!  Today, I'm not your typical procrastinator in the sense that I love to stay busy and love be useful at all times but I just do not have the energy!  I know, you're probably saying "yeah, yeah, yeah, join the club."  Truth is though, it's something that you just can't understand unless your have an autoimmune disease or something else that literally is causing your body to fight and harm itself (cancer, etc.).  It is the craziest thing and definitely one of the most difficult things about having Crohn's!!! I feel like I could fall asleep at any moment, I yawn ALL day long, never truly wake up (even though I never really sleep well either), and decide how I can do everything sitting down so I won't get too tired... I haven't stood up to shave my legs in the shower in years (no joke)!!! I've tried juicing and other drinks like it, Spark, and caffeine to no avail.  It's ridiculous, seriously!!! But anyway, this whole random run on really wasn't my point.

Self Induced Chaos... or Crohn's Induced Chaos, haven't really decided which yet or if it's both or if there is a difference at the moment. 

I always keep a long TO DO list in my household binder and my goal is to check one big thing off it a week in addition to my daily lists.  For example, it could be: a craft project, an organization project, getting my concealed weapons permit (crossed off), gutting and taking stuff to the Goodwill, taking our glass bottles to the recycling center (since the company refuses to pick them up even though the drop off location is their facility), or this week's... re-applying or renewing mine and my husband's passports.  I was done with my husband's and halfway through my form when I got online to do some research about a question I had and I realized that we both qualified for a renewal, even though both our passports had expired after we got married and that I could fill out the form online and print them off to mail.  Easy enough right?!?!  Nope, Self Induced Chaos!!!  Dang, there is something about having to fill out a government form that causes automatic stress and no one likes to have to do the same thing over again multiple times because you made a mistake.  I totally thought I was in the clear until I got to the whole name change part.  In the state I live in, there is no legal form to change your name once you get married and our marriage certificate makes no assumptions that you will be changing your last name.  So I go searching online for help, BIG MISTAKE, it's exactly like why you should never go to WebMD when you are not feeling good and self diagnose yourself... your cold or flu like symptoms start to look like cancer by the time you are done!  Everyone was saying different things but again, my state doesn't give you actual proof you change your name unless you court petition it, so I guess I'll send my marriage certificate in and see what happens.

Crohn's Induced Chaos... my house is a disaster!!! Okay well probably not really a disaster but definitely by my standards (and probably my husband's as well). Again, how do messy houses have to do with Crohn's, well, it probably has a lot to do with my earlier rambling about lack of energy and motivation.  That, and the fact that my surgeon put me on antibiotics for the next 3 months and they are making me "sick as a dog," for lack of a better analogy. I've only twice in my entire life been able to take antibiotics without having to stop due to them making me sick.  I'm trying to stick it out because it's a course we haven't be able to try before but if the extreme nausea and headaches do not go away soon, I am definitely pulling the plug on this attempt also!!! 

Ugh, next time I'll have something better to share!!! So, I'll leave you with these few thoughts and a good thing about my week.

 



Always true!!!

 



We all have struggles and also the ability to make others' loads lighter!!!

 

 

... and my highlight of the week!!! Harvesting some of our garden with my husband!!!

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!

 

 

Imuran (azathioprine)

Here's some reading material on the new drug that my Doctor has put me on.  I highlighted a few areas of concern that I have. I have been fighting taking this medication for almost a year now but I just want to be healthy and live a "normal" life like everyone else.  I don't know what the future holds and this isn't the direction that I wanted to go... but I'm trusting that there is a reason for all of this and that everything I am going through has a purpose.

Warnings:

Azathioprine may increase your risk of developing certain types of cancer, especially skin cancer and lymphoma (cancer that begins in the cells that fight infection). If you have had a kidney transplant, there may be a higher risk that you will develop cancer even if you do not take azathioprine. Tell your doctor if you have or have ever had cancer and if you are taking or have ever taken alkylating agents such as chlorambucil (Leukeran), cyclophosphamide (Cytoxan), or melphalan (Alkeran) for cancer. To decrease the risk that you will develop skin cancer, avoid prolonged or unnecessary exposure to sunlight and wear protective clothing, sunglasses, and sunscreen. Tell your doctor immediately if you notice any changes in your skin or any lumps or masses anywhere in your body.

Some teenage and young adult males who took azathioprine alone or with another medication called a tumor necrosis factor (TNF) blocker to treat Crohn's disease (a condition in which the body attacks the lining of the digestive tract causing pain, diarrhea, weight loss, and fever) or ulcerative colitis (condition in which sores develop in the intestines causing pain and diarrhea) developed hepatosplenic T-cell lymphoma (HSTCL). HSTCL is a very serious type of cancer that often causes death within a short period of time. Azathioprine has not been approved by the Food and Drug Administration (FDA) for the treatment of Crohn's disease or ulcerative colitis, but doctors may sometimes prescribe azathioprine to treat these conditions. If you develop any of these symptoms during your treatment, call your doctor immediately: stomach pain; fever; unexplained weight loss; night sweats or easy bruising or bleeding.

Azathioprine can cause a decrease in the number of blood cells in your bone marrow, which may cause serious or life-threatening infections. The risk that the number of blood cells that you have will decrease is highest if you have a genetic (inherited) risk factor. Your doctor may order a test to see if you have this risk factor before or during your treatment. Taking certain medications may also increase the risk that your blood cells will decrease, so tell your doctor if you are taking any of the following: angiotensin converting enzyme (ACE) inhibitors such as benazepril (Lotensin), captopril, enalapril (Vasotec), fosinopril, lisinopril (Prinivil, Zestril), moexipril (Univasc), perindopril (Aceon), quinapril (Accupril), Ramipril (Altace), or trandolapril (Mavik); trimethoprim and sulfamethoxazole (Bactrim, Septra); and ribavirin (Copegus, Rebetol, Virazole). If you experience any of the following symptoms, call your doctor immediately: unusual bleeding or bruising; excessive tiredness; pale skin; headache; confusion; dizziness; fast heartbeat; difficulty sleeping; weakness; shortness of breath; and sore throat, fever, chills, and other signs of infection. Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this medication.

 What special precautions should I follow?

Before taking azathioprine,

• tell your doctor and pharmacist if you are allergic to azathioprine, any other medications, or any of the ingredients in azathioprine tablets. Ask your doctor or pharmacist for a list of the ingredients.
• tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention the medications mentioned in the IMPORTANT WARNING section and any of the following: allopurinol (Zyloprim); aminosalicylates such as mesalamine (Apriso, Asacol, Pentasa, others), olsalazine (Dipentum), and sulfasalazine (Azulfidine); and anticoagulants ('blood thinners') such as warfarin (Coumadin). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
• tell your doctor if you have any type of infection, or if you have or have ever had kidney disease.
• tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. You should use birth control to be sure you or your partner will not become pregnant while you are taking this medication. Call your doctor if you or your partner become pregnant while you are taking azathioprine. Azathioprine may harm the fetus.
• if you are having surgery, including dental surgery, tell the doctor or dentist that you are taking azathioprine.
• do not have any vaccinations during or after your treatment without talking to your doctor.
 

What side effects can this medication cause?

Azathioprine may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• nausea
• vomiting
• diarrhea

Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately.

• rash
• fever
• weakness
• muscle pain

Azathioprine or 6‐mercaptopurine for maintenance of remission in Crohn's disease

 

Azathioprine (1.0 to 2.5 mg/kg/day) used among patients with non‐active Crohn's disease is effective for reducing the risk of disease recurrence over a 6 month to 2 year period. Higher doses of azathioprine (2.5 mg/kg/day) are more effective than lower doses (1.0 or 2.0 mg/kg/day) for preventing disease recurrence. There is also evidence that azathioprine may reduce the need for steroid treatment which could help reduce steroid related side effects.  Azathioprine appears to be more effective than 6‐mercaptopurine but this may be due to the relatively low dose of 6‐mercaptopurine (50 mg/day) used in the one study assessing this drug.  The long‐term effectiveness of azathioprine and 6‐mercaptopurine is unclear due to the short duration of the studies (6 months to 2 years). Azathioprine and 6‐mercaptopurine appear to be slow acting drugs. They are associated with some uncommon but serious side effects. These include suppression of the body's ability to produce white blood cells (which fight infection) and platelets (which allow blood clotting to occur), inflammation of the pancreas and an increased risk of lymphoma. Patients who may benefit from this therapy include those whose Crohn's disease is chronically active or flares frequently. Azathioprine or 6‐mercaptopurine may also benefit patients who are dependent on steroids but have experienced steroid side effects, or for whom steroids no longer work. The choice to use azathioprine or 6‐mercaptopurine should be made after careful consideration of the risks and benefits of using these drugs.

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 :)

Blessed Beyond Measure

Getting up this morning I didn't particularly feel as if today was going to be a good day.  It's been a struggle for the past month to stay positive as I feel like I've got attacks coming from all sides.  Peace has been hard for me to find and the places that I usually ran to felt so far away.  I've felt secluded and unable to share what's going on with me because I don't want to remind people that I'm the "sick" one (as I heard myself being called by someone this month) or to become a topic of conversation in one of the little gossip circles around me that I want absolutely nothing to do with (I'd rather not know what's being said behind my back as is).  To put it simply, I'm drained.  I'd taken a few extra days off last week to clear my head but my plans fell through and I ended up stuck exactly where I was trying to get away from. By Sunday night I thought I was going to lose it... mentally or physically, whatever "flew off the handle" first.  All day Monday, I started planning my escape even if for no other reason that to bring myself sanity. 

Then it hit me... that first sense of peace. 

It wasn't the heavens opening up and it may sound silly to someone else but it was my first little bit of the healing that I so desperately needed.  I was standing in the kitchen after just getting home from waiting in my car for over two hours for my husband to get out of a meeting that should have been over two hours prior (while my groceries were sitting in the backseat).  The meeting didn't go very well (something that I'd been praying for different results for a long time) so needless to say it wasn't a fun car ride home.  Anyway, like I said, I was standing in the kitchen trying to get dinner done as quickly as possible just as I do every night in between the short few hours after I get home from work and my husband goes to bed.  Nothing out of the ordinary, the same job I do every night because according to someone, like it or not, it's my job.  Then the peace... my husband walks into the kitchen and says, "thanks for coming to get me today and for making dinner," then leans down and kisses me.  It wasn't much but it was exactly what I needed to hear at that moment.  Those simple words stopped me in my tracks and brought tears to my eyes.  I felt loved... the greatest of all gifts.

Today came the second blessing.  Like I said in the beginning.  I woke up this morning a little sassy.  There were still a lot of things weighing on me.  Yesterday was NOT a good day and I'd driven myself to pure silliness last night just to make it through.  Not things that I can go into because they are not my stories to share but all hurt me the same as if they were my own.  With that being said, I had a doctor's appointment this afternoon and due to my insanity lately, I hadn't gotten my blood drawn.  There was the issue of time but also that fact that I had two doctors requiring the same tests and then two different ones but from different clinics so I didn't know how I was going to manage to accomplish this without having to pay for one set out of pocket because of the duplicate test so I decided to just wait until I could figure it out.  Normally not such a big deal but today's appointment was with my hematologist... the blood doctor ;)  But Dr. L is a blessing on her own.  I wish she could be my doctor for everything.  She walks in the room today and asks me how I'm doing and I blurt out, "I didn't get my blood drawn."  She laughs and says, "Is that your big confession?"  Did I mention that I love her?!?!  Any other doctor in her profession would say, well what's the point of this appointment if I don't have blood to look at... but not Dr L.  She sits down and says, "now how are you really doing?"  This woman does not ask just to be nice, she expects me to tell her.  So I do.  All of the things that I have been holding back from everyone else in my life because she knows and understands what this horrible disease is doing to me on the inside and how all of the things on the outside truly make it worse.  She passes no judgement (she also counsels cancer patients after work and has told me that I'm welcome any time) because she knows that I am not looking for sympathy or to have my feelings held against me.  Then she tells me even though I'm not sure that the Humira is actually working that I look healthy for the first time in a long time and she's not worried that I'm going to collapse on her.  It means more than I can express and it gives me hope.  It's doctors like her that make living with a chronic illness bearable!!!

 Peace and hope... what more could one ask for :)  But wait, there's more!!!

Blessing #3 came this evening when I saw my husband walk through the door.  He was carrying 2 new sets of tools that he won today at work.  He was happy, I could tell, and that in itself is an unusual sight when work is involved.  As he sets down the tools he says, "I got a call from X today."  I immediately stop and give him my full attention knowing that this conversation could go only one of two ways... especially after the not so good meeting from Monday.  But as I look up, I see that my husband has a huge smile on his face and I know what he's going to say but I let him tell me anyway.  "Starting Monday I'm finally going to be a Journeyman,"  is all he says.  I'm still speechless, it's what I have been praying about for the last 2 years.  We don't know how it happened because this guy has been the #1 person stopping this from happening this entire time but it's finally happening.  I couldn't be more happy for him.  I give him double high-fives and a huge hug.  "So today's been a good day," I say to him.  "Today has been a great day," he replies.  That statement alone is almost another blessing in itself.

Peace, hope, and security.  What can I say, I'm blessed beyond measure!!!  In our darkest hour we learn that we are never forgotten, never forsaken, never alone. Take that grain of sand no matter how small and run with it, nurture it, watch it become beautiful again.

Well that's it for me tonight... it's injection time!!!

An Update Over Due

Can't believe it's almost been two months since my last post?!?!  What can I say, I'm a work in progress!!!  There's been so many times that I have sat down to update but most times I log on just to turn around and log back off because I'm not quite sure what to write.  It's not that I don't have a lot to say but I'm definitely one that likes to look towards the positive and to be honest... I'm just not feeling it.

Let's start from the beginning... I started Humira on April 14th. I do not want to go into the details (the main reason this post took so long) but let's just say those first 4 shots at the doctor's office were unnerving.  I thought that I was there for teaching and she would show me how for the first 6 shots (4 that day and 2, two weeks later) but after the first shot, it was all me. Ugh... I'm getting "butterflies" in my stomach just thinking about it again.  The injections hurt!!!  It's not just the shot but the medication itself hurts going into my body.  Not sure what I expected but it definitely wasn't that.  The nurse and I decided that maybe the hubby should do my injections for me going forward just so I wouldn't have to deal with psyching myself out and we could just get it over with.  Ever heard the saying, "paybacks are a..." well the hubby agrees 100% and has no problem giving me my shots.  The good part is though, is that he has just enough understanding for what I am going through with enough "no nonsense" to get business done.

We made it through the start up doses before we hit the first snag... I got a cold.  A cold has never been a big deal for me before but when you no longer have an immune system, everyone starts to get a little concerned. I got it right after my last start up dose and it had only gotten worse by the time it was time for my first maintenance dose (2 weeks later).  The Dr immediately said no to my next dose and that if it wasn't better in the next few days then they wanted to look at my white cell count. A few days later came and it was traveling into my chest. They sent me in to check for pneumonia and thank God, the x-rays came back negative.  It took another week before my Dr felt it was safe to try again.  An entire week later than I should have waited.  The big thing with Humira is that you need to keep a certain amount of it in your system at all times which is why you have to give yourself an injection every two weeks.  The Dr gives you 12 weeks to see if it's working well enough before they pull you off and I'd hate to go through all of this to have it not work because I can't take it like I'm supposed to.  Anyway, back on my doses again.  I don't really notice any difference but I can say that the 3 weeks that I was off of it, I was extremely tired again.  So even though I don't really feel it, it must be doing something :)

Other than that, I turned 30 on the 9th of May.  Age is definitely just a number to me but at the same time I really don't feel like I've been on this earth for 30 years.  How does it go by so fast?!?!  My hubby has now been apart of my life for half of it and we've been together 45% of it :)  How crazy is that!!!

Well I know there's more to catch up on but that's it for now, the time clock is calling my name :)

An Online Enemy of Sorts

I've been searching all night for blogs of others with Crohn's Disease in hopes of finding someone else's journey that I could relate to or see how this wonderful and lovely (major sarcasm there) disease affects others.  I have to say that they are not many.  That's a good and a bad thing depending on which way you care to look at it.  What ending up happening though was that I had a revelation that thoroughly freaked me out and is definitely not healthy for my state of being at the moment.

Everyone's journey with Crohn's Disease is different.  It unfortunately has the capability to jump all over your digestive tract which is why everyone does not respond the same to the disease or treatments.  I've never found anyone with likeness to my journey.

Here's the shortened (ha ha... that's a joke) version my last 14+ year journey with Crohn's: 

I was diagnosed at 15 with Ulcerative Colitis after being told for a month that it was just a really bad stomach flu (thank goodness for my strong willed amazing mother who knew better than that).  I was immediately put on Salfasalazine and after a while I started to feel better so I weaned myself off of it.  The spring of my Jr year in h.s.  I became extremely ill again, went back on the meds, and immediately made an appointment to see a G.I. (which was booked until July).  By the 4th of July I was so sick that I could eat and couldn't take my meds because I threw EVERYTHING up, even water.  My amazing boyfriend (now husband) spent those last few days carrying me around because I was too weak to stand longer than a few moments.  On the day of my appointment, the G.I. took one look at me and said that she was admitting me into the hospital and we could talk after I was checked in.  That first stay at Doernbecher's Children's Hospital was 31 days.  During which time I was put on TPN (a feeding tube that bypasses the stomach) so that my colon could rest but it didn't do what they'd hoped and 3 weeks into my journey they let me know that I needed to have my colon removed. My family prayed and talked but the doctors said that at this point there wasn't any other choice. They showed me the horrible pictures of what my poor colon looked like but it wasn't until after I came out of surgery that they told me that if I hadn't gone with the surgery when I did or even at all, that my colon would have burst and all that poison in there would have killed me.  This also was the first I'd heard of Crohn's (the un-curable sibling to U.C.) but they wouldn't know one way or the other til they looked at it during surgery.  Best case scenario they should be able to create a j-pouch on the inside with my small intestines so I wouldn't have to have a permanent colostomy on the outside of my body at 17.  The whole process would take 3 surgeries to complete during the course of next 6 months (wasn't quite how I thought of spending my senior year in h.s.).  Surgery went well and they were 100% sure they were dealing with U.C. and not Crohn's which meaned that life would go on as normal after I healed because without a colon you can't have U.C.  I made it through my senior year very exhausted, not at school a whole lot, and a little cautious (hiding a temporary ileostomy can do that to a teenage girl) but with high hopes for the future.

I started college that next fall really excited but still feeling really exhausted.  I kept getting what they called pouchitis - an infection to the little reservoir they'd created for me.  I also never returned the health they expected me to.  During my sophomore year I lost my health insurance and it all started down hill from there.  That summer I exhausted myself that my anemia became so bad that my legs became covered in welts that looked like someone had hit me repeatedly with a baseball bat.  From there I got my first fistula.  I had no idea what was going on or what it was and no doctor to talk to.  I went to the emergency room and came home in tears because the doctor had no idea what I was talking about tried to tell me it was an STD (I was a virgin and not sexually active).  It would heal and go away and then return.  I was hospitalized many times over the course of my Jr and senior year in college and it even caused it so that I only completely my degree as far as I could to graduate... completely missing out on completing my program and student teaching.

It wasn't until after college that my mom could get me on her health insurance for a short while.  I went back to the doctor and they kept saying how they must have missed some of the U.C.  It wasn't until I had a major fistula that sent me to the emergency room that we finally started talking about Crohn's.  The light bulb:  U.C. doesn't have fistulas but Crohn's does... and Crohn's is not curable.  I then found out the next big blow.  In Crohn's you never want to do a complete removal of an organ because the disease will just attack another digestive organ, you are just supposed to do re-sectioning.  But I'll never know if the right choice was made to just take it all out... I mean I saw the pictures and they were really bad... but my doctor's not around to ask, he's now called Dr. Death and sitting in jail after being charged with errors that caused the deaths of many of his patients... but who's to say whether it was a mistake or it was just the way that my path with this disease was taking.  I lost my insurance again due to age but got set up with a Dr during one fistula surgery that was willing to help out however he could.  He got me set up with Pentasa and infusions of Remicade but both were too expensive without insurance that I was told I couldn't continue without paying my bill.  I really wasn't on it long enough to know if it worked but once off you can't go back because you become allergic.

This roller coaster has been they craziest thing.  It's only gotten worse as time has gone on.  My worst fistula was 2 years ago and came 3 months before we got married.  This one decided to travel outside of my digestive tract into another organ and I had to take an entire month off of work to re-cooperate... re-cooperate, not heal.  My poor husband, being married to me must be a nightmare.  Neither one of us had any clue that the road was about to get so bumpy... nothing in the past 11 years of our relationship had prepared us for the newness Crohn's had in store for our future.  Each fistula has gotten worse... to the point that I'm starting Humira next week (which I've done everything possible to avoid).

Thinking about my journey and everyone else's tonight is what freaked me out so much.  Tonight I saw a picture of a woman who had a fistula that traveled out to her tummy by attacking a scar from a previous surgery.  Sounds disgusting and scary but it's not what scared me.  What scared me is:

1. I can control most of this disease but I can't control the fistulas. From what I've read, anyone who's ever "cured" their Crohn's has never had a fistula.
2. I can't have a resection to remove part of the disease like everyone else because none of my fistulas begin in any place that can be removed without removing the little hope that I have for not having a permanent colostomy for the rest of my life.  As my Dr says, we loose that and we loose all other options.
3.  If these injections don't work, outside of some miraculous healing, I am out of options
4.  I'm scared -- I can't stand admitting it but I am.  I've been strong for 14+ years.  I'm always the optimist.  I'm not worried about getting through this... I have a blessed life and will no matter what.  But how am I going to feel if it doesn't work and this disease will have stomped on every path I thought I was supposed to travel down.  What will happen to the things that I cherish most if this same path keeps it's unending circular shape and nothing changes?!?!

Sorry to unload this but I can't wake up the hubby to confess my fears because we both have to be at work in a couple hours and he needs his sleep. 

Just goes to show you that all the information on the Internet isn't good for you ;)