Changes Made All The More Terrifying With IC!

               In this life only a few things are certain and Change is the top of the list. Life never stays on a steady, well-traveled path and is always curving, switching and flipping in every direction. The first time I saw a spaghetti junction was about 15 years ago and I could not help but chuckle to myself. That was how my brain would look if everyone could see it. 
               Now that I am older I have discovered that most people think the same and it is usually because something in their life is changing. Could be something terrible? Could be something amazing? Only the person it is happening to can say for sure, but we all go through it. 
               Since my condition was discovered I also found that anytime changes happen in my life, planned or ones from chaos, I have a few thoughts that run my mind: 
               1) Okay, there's going to be a change in my life. (Recognition)
               2) Is it going to be a good or bad thing? (Conscious Choice)
               3) How will it affect my condition? 

               Every single person on the planet who experiences change goes through the first two. Everyone. The time frame for each person may be different but they go through it. 
               The third option is just for people with a condition, any condition, that affects their everyday life. 
                When change happens people with any condition that affects the way they live, go through a terrifying step that I call the What If stage. We run through how we deal with our condition and think of every possible thing that can go wrong, with this new change, to make our condition a negative again. 
                 If like me you have worked on your condition for years and finally getting it to a point where you have it 90% plus under control to suddenly have to reevaluate it again makes you, a little crazy, a little mad but mostly, for me at least, I get an overwhelming sense of fear. This is usually where the what if part comes into it. 
                  What if this change makes my condition worse?
                  What if this change makes it better, then worse?
                  What if this change affects how I deal with my condition?
                  What if this change makes it so I need to change more things?

                  You get the idea. Automatically we seem to focus on the negative impact any change will have on our lives normally and having a condition like ours that relies on certain things can cause massive waves in the way we think and approach it. 
                    Honestly, with a condition like ours anytime any change that is made will probably have bigger consequences than just the actual change itself. It may very well affect how you take care of the condition and you may have to rethink other things as well. 
                    But change happens to everyone. And I mean EVERYONE! 
                    The only thing we need to worry about is how we deal with it. You know more about your condition than anyone else and you know what you need to do to make it better. Whatever the change that has occurred in your life you will find a way. 
                     You Will Find A Way! 
                     Did you hear me?  You Will Find A Way!
                     Even if it has taken you years to cope with this condition, you have figured out what works and any change that happens, that probably will happen, is simply an adjustment. Like when you have braces and they need to be changed as you move closer to your straight smile goal. At first, it is painful, but after a while, you adjust. You can do it and know you are never alone. We are in the same boat as you. We can do this.
                       And you never know maybe the change will be the best thing that could ever have happened.  :)

                       #alwayskeepfighting
                       #youareneveralone
                       #youwillfindaway

When Low Points Are Normal!

               Admit it to yourself. 
              Go on I can wait. 
              Okay, so if you are still reading you have admitted that you agree with the title of this blog. 
              The time comes in every condition that is pain related when you reach low points. It is inevitable. The pain gets too much. The pressure to keep up appearances. The ignorance of others. The constant controlling of everything. The fact that though your life has changed in a huge way, the world continues to tick as if it is the same. 
              Whatever it is that sets off the trigger it does not matter. The fact is we all hit them. A low point. In whatever form it takes there it is. Your low point. You convince yourself that its okay everyone has a low point and push on. Things are going great maybe for a few days, weeks or months, but then it happens again. 
              Another low point. And before you know it another low point. 
             Before you know it, you cannot remember the last good day and you seem to be counting more low points than even normal ones. You go through the process I like to call the IC 8 Steps To Recovery. 
             Realization - Notice the amount of low points. 
             Confusion - How did it get this way? 
             Denial - No it cannot be that long since a good day. 
             Anger - I thought things were supposed to get better. I'll make them better. 
             Sadness - How can this be? Why can't things get better? (I call this the pity party step)
             (Anger and Sadness can interchange many times before you reach the next step)
             Loneliness - No one knows how this feels. I'm all alone.
*******This is usually when most people go thru pretty much every emotion*****
             Finally the upside: 
             Acceptance - Okay its true. Its really been that many days. 
            Determination - This does not make the days instantly get better but this is where people are made or broken. For now let's focus on this one. 

             Determination is described as the follow: 

• The act of coming to a decision or of fixing or settling a purpose. 
• Ascertainment, as after observation or investigation.
• The information ascertained; solution.
• The settlement of a dispute, question, etc., as byauthoritative decision.
• The decision or settlement arrived at or pronounced.
• .The quality of being resolute; firmness of purpose.

     I personally like the last one: The quality of being resolute, firmness of purpose. I like the idea that it means we have firmness of purpose. When we reach one of the low points we need something as strong as a purpose to keep going. It could be something small, like a smile from a stranger to show that they see you or something more significant like a loved one. 

      For me its really depends on how deep my low point has gone. If i am just skimming the top then a simple rain fall and dancing in the rain with the kids will help lift me out. Other times I feel like Alice in Wonderland who got too close to the edge and fell in deeper than she ever thought possible.  Those low points are something else entirely. 

      One of my lowest IC points came about a month or so ago. I had to make an emergency trip to my hometown for a funeral, already a big mess. I was to be the band aid for the person with a giant hole in their heart where the loved used to be.  

       How can anyone even begin to do something like that? 

       What could I really say to make a pain like that go away? 

       Honestly, I just did the best I could. The trouble for me started when I returned. I miss my family a lot, more than I usually care to admit, and I missed my husband and children while I was there.  

        Flying home I realized a few things, mostly that the entire time I had been home I had been playing the part of band aid. Smiling, laughing, making jokes and trying to make everyone else feel better. Its what I do. But on the plane I thought back to when I had cried my own tears of sadness for the loss to our family and I came up blank. 

        I had focused so much what I had to do that I forgot about my own grief and when I returned I did what I do best. I buried it. Once I am home I have other responsibilities and grieving for a family member I did not know extremely well was not one of them. 

        Long story short I did not know how far into the rabbit hole I had fallen until the old me emerged, I like to call her self sabotage. She usually stays buried but every so often she raises her ugly head and I begin a downward spiral of despair that leads me to cause my own husband and kids grief. 

        I did not know honestly where the hole was I even fell down but I knew instantly I would never make it out alone. There was no way. I had no choice but to get on my knees and pray. 

        Yes, I said pray. 

        I am a member of the Church of Jesus Christ of Latter Day Saints, aka Mormon, and proud to be. I am not saying that religion is for everyone but in that moment, as well as many before and I am certain more to come in the future, it was my saving grace. 

        By this low point I had wedged between all other relationships and he was simply the last one. I knew it could not do anything alone and he would help me, even though I am not even close to being the church member I wish I was. 

        Now saying this I am not saying he automatically fixed everything and I lived happily ever after or that everyone would feel the same way. You need to find your own saving grace. In whatever form it takes. We are all different and as such need different things. Grab hold onto anything. Anything at all that will keep you in the fight and keep you in the game. 

        I am the biggest supporter of any cause that is Suicide Prevention so I will always, always find a way to hang out. And I want anyone reading this to do the same. I do not care about your past or what you are dealing with, I care that you have a future. 

        No matter how far down the rabbit hole goes there is ALWAYS a way. 

        Though I do not know you. I am with you. I care. Always keep fighting. 

         Alison :) 

         #Alwayskeepfighting

         #Wegotthis

         #Neveralone

       

             

Long Over Due Update!

Says it all I think. 

           Firstly let me apologize for the lack of updates. The only thing I can say in my defense is life sometimes just gets in the way. 
           Since I last updated the blog a few things have happened. In this one I'll just get down to the biggest one. My 2nd year anniversary of being diagnosed. 
           Looking back at the post I made when this all started makes me both sad but also incredibly thankful. Over the last few years I have learned so much about myself, those around me and also the food industry as a whole.  
            I think the biggest thing I have found during this time is my voice. I finally discovered that I can speak up for things that I need and want. Family and friends have described me as many things but outspoken was not usually one of them. I would usually just go with the flow regardless of how I felt about things. 
            Now I would not say that I have grown to disagree with people to just disagree. I am still in the learning process of growing to stand up for myself and make sure my opinion is heard. 
            This has played a huge role in my condition as I need help. Not with everyday tasks or anything quite so dramatic, but when ordering food at a restaurant, of any kind, I have had to learn how to get what I need by speaking up. 
             To most people this would probably be a no brainier, yet for me is has been a huge step. Over everything else I have experienced over these years that would have to be the big one. 
              The smaller things would be things like what food I still love regardless of restrictions, how far I am willing to push myself to get the sugar I want and also I am a complete addict to food, not just sugar. 
             In a nutshell I seem to have adjusted completely and it took about a year and half to do so. So if you are just starting this journey keep going. I promise the time goes faster than you think and you will adjust to your new life faster than you think. 
             You got this. 
    
             #Alwayskeepfighting 
             #Neveralone
             #Wegotthis

             Alison :) 

One Year Anniversary! I survived!

              One Year Anniversary!   I Survived! 

        Looking back at the first post I made on this blog a year ago a few things strike me. First, I was clearly out of my element.  Forced from a lifestyle I had experienced my entire life and thrust into a new one without warning.  Second, I was completely and utterly terrified about what it meant for me.  Could I really survive without soda or chocolate For The Rest Of My Life?  Third, the complete relief I felt when they finally discovered what was causing my pain and that the symptoms could at least be controlled, for the most part.  

            I get emotional just thinking about those first few days a year ago.  Before the official diagnosis I had become a person, I quite frankly, hated.  A person who had been pulled into a bottomless pit of pain, misery and depression.  

             Who was that crazy person?

             Couldn't really be me?

             My heart physically aches for that person who suffered for almost two years with no knowledge of what the problem was and how it could ever be fixed.  I will never be able to explain in words what a relief it was, and also terrifying, to find out that I had IC.  

             Basically I'm glad that person is no longer around and that I can type this blog to you, a year later, with a new attitude, a new appreciation for life and a new lifestyle that makes me a little healthier and honestly happier than I was before.  

             So Alison, you ask, what have you learned during your year long journey?  

             Do you have the wisdom of ages?

             Have you cracked the IC code for living without pain?

             Honestly, I do not feel I have mastered my condition, yet I am dealing with it as best as I can on a day to day basis.  No, I have not cracked a secret code to making living with IC hardly a concern.  But for our condition there is no code as each one of us is effected differently...sad but true.  

             Now on the other hand I do feel I have learned a lot about my condition, the human body in general and also myself during this year.  Here is a few things I have learned: 

• A positive attitude goes a long long way.  During the first few weeks of my diagnosis I had to keep a positive attitude, more so than usual, as I face was a lot of circumstances I was not prepared for and never knew I would get into.  As corny as it sounds being positive helped a lot and I was able to tackle things easier with the attitude of I can do this. 
• Planning is key to success, especially with a condition like mine where food plays a factor.  Planning out meals is a great way to get a head during the week and relives some of the stress that comes with flare ups and unknown situations. 
• Flare ups will occur.  Our condition is chronic and there is no cure.  No matter how great of a day I have sooner or later a bad one will raise its ugly head.  I have learnt that being afraid of a 'bad' day can ruin my good and great days, so now I refuse to let fear hold me back. 
• It's nothing to be embarrassed or shy about.  It took some time but I have reached the point in my diagnosis that I am not afraid, embarrassed or shy about asking questions about how the food is prepared when we go to a restaurant.   For me this one is huge as I do not like 'inconveniencing people with 'special' requests, but since my condition came to light I really have no choice.  Its either face the prospect of pain or speak up and have them prepare the food as I need to be.  
• Having a support system is important, but ultimately it comes down to me.  Its great having support, especially in the early days of my diagnosis and during any particularly bad flare up.  However I have come to realize that life goes on whether I'm having a great day or a terrible one.  Ultimately it really comes down to me.  If I am able to work through the pain and deal with it, then the day goes on.  If it turns out to be a really bad day, I am so thankful for an understanding husband and children who help take care of me.  
• All the previous blog posts.  Not in the slightest a way to get everyone to read all the posts I have made in the last year, but everything I have written down has taught me something during this journey.  From my first post to this one I really have grown as person through this experience and I am sure I will continue to do so as my journey continues.  

         So in a nutshell I made it.  My one year mark.  Its so crazy to think that that soda loving, chocolate addict I once was is now the still addicted to sugar but living a better life person I am today.  I never thought in a million years that I would be able to give up chocolate or soda.  In fact I remember saying to my husband at one time I would only be able to do so if I had some kind of medical condition that would force me too...well, how is that for eating my own words.  :)   

        Part one of my journey has ended but there should be a lot more to come.  

      

        #Oneyear  

        #Alwayskeepfighting

        #Youarenotalone

        #Wegotthis   

Candy Sweet Holidays: Valentines Day and Easter Sunday

             Valentine's Day - A day when hopeless romantics, like myself, relish in the idea that they will be given a special gift from that someone special.  

              Easter Sunday - A day when we are praising Jesus Christ for rising from the dead, while the little kids are finding chocolate covered bunnies and eggs in an open space.  


            Before my diagnosis both of these holidays were unmissable.  Being a hopeless romantic and getting proposed to on Valentines Day I can not help but love a holiday, all about love.  And of course the mass amounts of cheap chocolate that go on sale the next day.  Easter is the one time of the year, in the USA, when Cadburys mini eggs and Cadburys Creme Eggs are available for purchase.  Each year I would 'stock' up during the month and then bing eat them for the next few weeks.  

            This year things were incredibly different from the chocolate-holic, candy loving, all teeth are sweet teeth type person I once was.  I could not partake of the usual activities and even went as far as not having an Easter egg hunt in our backyard.   But honestly I found something, much more worth while. 
            As cheesy as it sounds, its true.  
            For Valentines day I still made the kids their little baskets of goodies, but I was able to appreciate the holiday in a more romantic way instead of focusing on the things I really wanted yet could not have.  
            For Easter Sunday I watched my children play with and eat their goodies, we went out for a meal as a family to celebrate the day and I was taken back by the happiness I felt just focusing on their joy at the days events.  
            Now do not get me wrong it was rough, on a personal level for me, as I am such a sugar addict.  Easter especially was a severe test of my resolve.  Anyone who knows me, knows how much mini eggs and creme eggs mean to me.  Of all the chocolate I had to give up those are the top of the list.  I was kinda of lucky last year, I did not find out about my condition until after Easter last year so I was still able to partake at that time.  
            I even admit that I came ridiculously close to buying some and eating them in the car on the way home.  (And I mean really really really close).
            But I am proud to say that I am still chocolate free.  (Almost a year now).  Here is how I was able to withstand the onslaught of my favorite chocolate time of year:

• Focus on what the holiday really means, not how the candy/chocolate fits into it. 
• Treated myself to things I could have and be thankful I have other options. 
• Realized that some people have it worse than me, way worse, and that giving up something like chocolate is not a big sacrifice compared to others. 
• Be proud of myself for making it without as long as I have.  (Many people did not think I would make it a day, let alone almost a year - including myself.)
• Focused on other people during the holidays.  After all giving is always better than receiving.  

        I still do not claim to be an expert on facing down each demon, we each have.  And I know I am still a long way for being perfect in dealing with my condition, however I can say that though this year of treat filled holidays was rough, I made it through.  

        I made it through. 

        I can not tell you how good that feels to say that.  I survived.  And no matter if you did better or worse than me, we are still here fighting the good fight.  We got this!

        #Alwayskeepfighting

        #Youarenotalone

        #ICliving  

        #Wegotthis

Adjustment and Acceptance!

      The Definition of the word Adjustment is as follows:

• the process of adapting or becoming used to a new situation.

           The definition of the word Acceptance is as follows: 

• willingness to tolerate a difficult or unpleasant situation.

         The reason I started this post with the definitions of the words in the subject title is that I wanted to make it clear that these two words are different, even though sometimes we confuse them.  

         A few weeks ago my husband and I were talking about something, I cannot remember specifics, I only remember that at some point during our conversation I got upset.  Very upset and extremely emotional.  After I was calm enough to think clearly it occurred to me that my condition, not our conversation, had been the cause of my outburst.  

        Over the course of the last 11 months I had adjusted very well to my condition.  I still have flare ups but then I will for the rest of my life, yet I am able to understand them better and be more prepared for when they do occur.  

        That being said it was not until that moment a few weeks ago that I realized that in all my planning and ways to deal with my condition I had not yet accepted it.  I was caught up in the idea that adjustment and acceptance were the same thing.  

       They are not. 

       I realized that our conversation touched lightly on the fact that due to the nature of my condition and how much pain I can be, it limits my ability to do some tasks that would have been ridiculously easy in the past and quite honestly I was not prepared for the way I reacted. 

      Having it pointed out to me that my condition forced limits on me, that everyone else could see, was like someone rammed a giant wrecking ball through the side of our house.  

      I had adjusted and tried to make my condition as hidden as possible while I dealt with it, yet it was still clear to those around me and due to my so-so attitude about it, I could not handle the information I was presented with.  

      I had not yet accepted that my condition will never change.  That I never will be back to the person I was before.  That never again will I be able to look at food or drink without having that annoying thought that pain would come if it simply touched my lips.  I had not accepted that for the rest of my life my condition is a part of me. 

      I had to understand that accepting my condition does not mean in anyway that I surrender to it.  It does not mean that I allow the days of pain to bring down my spirit.  Accepting it simply means that I'm all in.  

• I will no longer apologize for requesting an item on a menu be changed to accommodate my needs.  
• I will no longer fear food and the damage it can cause. 
• I will no longer avoid situations that could cause more fear or pain. 
• I will no longer blame myself for my condition. 
• I will no longer fear the pain that will at some point come anyway.

      Acceptance to me is embracing my condition.  Sure, I have adjusted well so far and that will not change.  My accepting my condition will help me in dealing with my emotions during bad days and realizing that good days will come no matter how bad it gets.  

     Since that night I feel that I have embraced my condition on a much deeper level.  My life will never go back to the way it was and a part of me is in mourning for that person.  But still life goes on and now I will become the new person I was meant to be. 

     #AcceptanceAndAdjustment

     #AlwaysKeepFighting

     #YouAreNotAlone

     #WeGotThis

Pain is Exhausting!

         Anyone who has been in serious pain, like after surgery or an injury that caused them to be laid up for any length of time, can attest that it is exhausting.  You are not just tired you are physically sometimes not able to keep your eyes open and function like a normal person.  
        Having IC and the chronic pain that comes with it causes me to have those days.  Yesterday in fact was one such day.  I worked my part time shift at my new job and for the first 3 hours it was fine.  I was smiling, helping people as best I could and then...
       BAM!!
       The last 3 hours of my shift were terrible.  Now as far as my customers knew there was nothing wrong, as I have become great at dealing with my pain and knowing exactly when to take my medicine to help relieve my symptoms.  But within myself raged a battle of epic proportions.  I drank as much water as I could while talking on the phone, I took my medicine before it got overly bad and then all I had to do was wait.  
       The waiting part is the worst for me because I am still in pain and trying to hold it together long enough for the pills to kick in, and then they take another 20 - 30 minutes to work.  Anyone who has suffered pain this bad knows that during that 20 - 30 minute gap it feels like weeks and sometimes months.  You start thinking to yourself: 
       Is it working?
       Why is it not working?
       Please start feeling better!
       Why is it not feeling better?
       Should I take some more?
       Should I have waited this long before taking it?
       The list really does go on and on as you play the waiting game with your medicine.  And then it happens, you begin to feel better. By this point I was laying propped up in bed with my hubby watching a new TV show he wanted to see.  
       Now every time I have a flare up this is what happens in a breakdown: 

•  Pain starts
• I drink water.  Lots of it.  Very very quickly
• I wait as long as I can before taking any medicine (Just in case the water fixes it)
• Take my medicine
• Wait for it to kick in (Forever)
• Lay in bed, propped up on my back and lay as still as possible.
• Start feeling better so move around more. 
• Pain warns me not to over do it so soon
• Lay back down for a while...

     .....And then the exhaustion hits.
     My body as been dealing with chronic pain.  In my case sharp stabbing pains that feel like I am being attacked by a knife on the right side of my abdomen.  During that time my body has been fighting to correct the problem as well as keep me focused on my job, driving home and then making food before I hit the bed.  
     It's exhausted from all that work so once my meds kick in and I start feeling better I usually have around an hour or two before my body decides it is not playing anymore and just wants to crash. 
     Last night it was around 8.55 PM that this happened.  
     Instead of succumbing to the immediate desire I had to sleep for a week, I did the next best thing.  I curled up with my hubby and watched the TV show he was watching.  I engaged my brain enough that I managed to stay awake and then once I dropped off the kids this morning I came back to bed for a few hours to help my body recover some more. 
     Usually when I have a flare up it takes around two days and maybe a morning to correct itself.  Today I am still feeling it but not as bad as yesterday.  Yesterday when I came home from work I am not ashamed to say that no housework, no homework, no nothing got done while I was resting.  I stayed downstairs long enough to hug my babies, refill my water jug and grabbed some food I knew would not hurt me.  
     Since I am a wife and mother I do not have the luxury of doing this every time so here is my plan for today: 

1. Make our bed. 
2. Drink water.  A lot of it.
3. Update my blog. 
4. Drink more water. 
5. Make some lunch. (with water)
6. Clean up the downstairs. (Still suffering from Christmas explosion)  While drinking lots of water in my water that follows me around everywhere.

    You get the idea.  On a good day these things do not take very long.  On a flare up day..this could be my entire day.  If necessary I will take more medicine, but as I stated before I always think its better to let your body deal with it, even if I know later I will be exhausted like last night.  Drinking lots of water usually helps to the point that I do not need to take medicine every time I have a flare up. Sadly, it does not work for all of them.  

     Today I will pretend that out there in the world is hundreds of people dealing with this same problem and still living their lives as best they can.  Even if they do not read my blog :)  This helps me push through the small 'leftover' pain from yesterday and hopeful kick butt on my housework/homework today.  Remember even if we do not see each other we are all in this together.  Always Keep Fighting Friends. 

     #AlwaysKeepFighting

     #FlareUpsSucks

     #WeGotThis 

     #AllInThisTogether