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...
Wednesday, January 20, 2016
Friday, January 8, 2016
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...
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...
Saturday, January 2, 2016
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!!!
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...
Thursday, December 31, 2015
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.
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...
Sunday, April 5, 2015
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...
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...
Wednesday, November 12, 2014
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 :)
Until Next Time...
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...
Monday, September 15, 2014
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!!!
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...
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