Holiday/Christmas Survival!

         If there is one holiday/season that is worse in regards to food it has to be the Christmas/Holiday feasts that happen once a year around this time.  As part of our family tradition we have a huge sleepover at our home and a put out a large buffet type feast with all the things I know the family will love.  
        Similar to my feelings towards Thanksgiving this year, after my diagnosis, I was dreaded this event for the first time since it began.  Although admittedly I had a lot of fun buying the feast for the family and planning small activities for the kids while the adults talked and other grown up type things.  
       Really this year was the first time since my diagnosis that I really wanted to gave in and drink about a million of the soda cans I had purchased, along with all the pies.  It was my first real temptation test as before now I had craved the soda yet the idea of the pain had held me at bay.  My mother in law made a comment that made me think.  
       She said that we say we don't care about the pain while we're eating but then regret it.  And she has a point.  Sure I could drink a can of soda, technically I could drink as much as I wanted, but like life I would not be able to control the circumstances that followed.  Admittedly I ate more ham, more sandwiches, more pie and more everything than I should have yet I was able to pivot along the edge of my pain level instead of falling completely. 
      If you survived like me with little pain, I salute you.  It was definitely one of the most challenging things I have had to do since my diagnosis.  Here is what I did to balance my condition with eating some of what I wanted: 

• Purchased rolls only after checking the ingredient list while waiting in line at the store. 
• The ham I selected was honey baked, not smoked so it was listed on the things I should have been able to eat.  
• The vegetable tray I got was the biggest I could find, since I knew that regardless of the other things those I could eat as much as I wanted. 
• Even though ranch was included in the vegetable tray and I purchased more for the feast I knew that it was off limits and did not even attempt to try any. 
• Though I also purchased ridiculous amounts of canned soda I also made sure to get plenty of bottled water again making sure that my guests and myself were taken care of. 
• Indulging in a little pie is a given with me, since I cannot stay away from sugar for long periods of time so I made sure the ones I got were pumpkin and apple.  Ones that everyone loves to eat and also ones I knew I could eat. 
• When choosing the potato chips I made sure to again, select ones I knew the family would love and then plain ones for me. 

     As I stated above, even with my carefully planning I freely admit that I over did it and played with the borderline of my condition a little too closely.  I do feel that with each passing day, week and month I become more accustomed to my condition and the things I can and cannot partake of, yet I feel a little indulgence is something we all need at one time or another.  

    Like before I drank lots of water and ate a lot of vegetables to make up for the other food and it worked out, for the most part, in my favor.  That being said everyone has their own limit so I do not recommend trying something like this until you have had a few months of working out your limitations.  

     Whatever happened during the Christmas/Holiday break I hope it was a happy time for you and that you were able to spend time with your loved ones.  Merry Christmas to you all and a Happy New Year for 2016. 

      #AlwaysKeepFighting

      #StayStrong

      #ICLiving

      #Survivors 

Thanksgiving Survival!

                    Well, if you are reading this then like me you survived one of the holidays I was honestly dreading this year.  Before my diagnosis Thanksgiving was one of my favorite holidays and although I would like to say it was because of the family time, games and giving thanks it was really all about the food.  
                  Being from England I did not grow up eating the kind of food you have at a traditional Thanksgiving feast so to me the entire experience was so America from day one.  And I loved it.  Green bean casserole, mash potato, yummy, buttery bread rolls, sweet potatoes/yams, gravy by the boat load, mounds of stuffing and of course we cannot forget about the star of the show, the turkey.   Then comes my favorite part...dessert.  Pies of every kind smothered in spray whipped cream, cool whip, ice cream or a combination of all of them.  
                  I admit that food is a big thing for me and this holiday was the one time of the year I could really embody the glutton within myself and she loved it.  
                  Then came my diagnosis and honestly the thought of this holiday cause my depression to raise its ugly head and laugh at me and my inner self.  No longer could I just eat my weight in turkey, sides and dessert.  No longer could I have second or third helpings later on the day while we played games.  No longer could I devour eggnog by the gallon as I watched the in laws banter about the worlds events.  
                  Honestly I believed that this time of year would be nothing but sweat pants, depression and my new abiding love for my homemade oatmeal cookies.  (Truthfully, it is also why I put off making this post.)  Sure, I could have let my spirit stay in the darkness and wallow but then I realized something. 
                  It is customary when going to someone's home for a get-together, like Thanksgiving, to bring something.  In this case I was charged with bringing candied yams/sweet potatoes.  My husband just loves them and even though I'm still new to making Thanksgiving things I gave it a try.  
                  Well, as I was debating which recipe to use I remembered that with my condition it is not up to every single person I know to change their recipes or make special food just for me.  It is my job and my responsibility to figure out what I can eat or eat everything and deal with the consequences.  I decided on door number one. 
                   While making the candied deliciousness for my hubby and the family I decided to make sweet potato mash, something I know I can eat and do very often.  Also once we reached the table along with the family I was able to pick portions of turkey that had little to no seasoning.  When it came time to dessert I did indulge a little and had two pieces of pumpkin pie, but then I cannot resist its charm.  
                   Sure it was not the usual mass feast I would have normally eaten during the holiday but really it worked out better this way.  I was able to keep my pain at bay, enjoy myself with the family and I did not really feel like I missed out on everything.  (Though I admit watching the green bean casserole be devoured by others was hard to watch.)  Next year I will have to create my own recipe for it so I can have some.
                     Basically I realized that I have control over my condition.  It does not control me.  I could have just eaten what I wanted and suffered the pain that came with it, but instead I chose to embrace my condition.  Thanks to my effort I had one of the best Thanksgivings I have had in a long time and as corny as it sounds I was able to appreciate the true meaning behind it...being thankful. 
                    I am thankful for my condition as it has showed me that I need to take care of myself to be able to take care of others.  It has given me patience with myself.  It is teaching me discipline...okay its not perfect, it is still a work in progress but the point is I am not allowing the negative parts to control me.  
                    Holiday or no holiday we can not allow the negative portions of our condition to get us down.  As I have said before, cry, scream, rant and rave if you must, but do not allow yourself to be pulled under by it.  We are the same people we were before, except now we have to deal with something that not many people understand but its okay.  
                    We got this. 
                     
                    #NeverGiveUp
                    #AlwaysKeepFighting
                    #TogetherWeAreStronger
                      ichelp.org

When Life Throws You a Curve Ball!

       Living with a condition like IC feels, in a way, like playing a game of baseball.  (Bare with me as I know very little about the sport as I am from England)  Curve balls, I am told, are one of the ways the pitcher can throw the ball.  Well, days like today feel as though its a good description.  You never know what the day will bring and if your body will be nice to you or give you ridiculous amounts of pain.  
       I do not mind telling you that today my body opted for the second one.  Though I can not complain.  The days where I need medicine are starting to be fewer and further apart thanks to my life adjustments.  I really feel sorry for those people with this condition who can not go a day without having to take something for it.  
      For them the baseball game is one where they can never get to a base.  Always seemingly stuck at the Home plate and never being able to make contact with the ball.  In many ways people like me, who can adjust it with lifestyle changes have an advantage.  We already start out with the innings in our favor. 
      That being said the pitcher can throw at us whatever they feel like so even though each day is a surprise we have the foreknowledge that with another adjustment or medicine it will go away.  
       Today I deal with the pain as I always do.  I eat things that are high in alkaline (the opposite of acid), such as cucumbers, drink a ton of water, around 92 ounces, and if the pain continues I take some medicine.  I try to remember that this is not the worst my pain has been and even though it will not be the last time I am in pain, it will get better.  
      I try my hardest not to let my emotions/negative feelings take over as its a slippery slope for me.  I listen to music that is upbeat, I try to move around the house/clean as I would normally, except maybe a little slower and I watch TV shows/movies that take me away from the reality and help me focus on something else.  
     I have said it many times before and I will say it again..We can do this.  There is always a choice on how we deal with the situation and I choose to not let it get me down.  
     In every sport, not just baseball, there are winners and losers.  It is up to the losers on how they handle each loss.  Have a few moments to wallow and curse the universe...but then deep breathes and take on the day.  We can not change our condition and it will never leave us, but we can not let it hold us back from life.  Sure today I will not be able to chase the kids and dogs around or move as fast as I usually do, but there are other people out there who have less good days than me.  
     I am not a quitter.  I am a fighter.  Join me in the fight.  You can do it. 
     
     #AlwaysKeepFighting  
      ichelp.org

Invisible to the eye, not the rest of me!

So True!

        The other day a close friend said to me, "Oh that's right.  You still have your thing eh?"  She was referring to my unseen condition Interstitial Cystitis.  It was said in such a way that I felt a range of emotions. 

        Disbelief - Didn't I mention I'll have it forever?
        Upset - Do they think I make up flare ups?
        Anger - Do they pay attention at all?
        Hurt - Do they not remember the daily struggles I tell them about?

        Almost as quickly as I felt each emotion I thought of something else.  Yes, you told them it will be with you forever.  No, they do not think you make up the flare ups.  Yes, they care.  Of course they care.  And sure, maybe it will slip their minds on occasion.
        But why?
        Because they do not deal with your own daily struggles.  You may tell them about some of them, but they have their own daily things to worry about.  They do not feel the pain of a flare up, even the little ones.  They do not see the hours of food shopping and meal prepping you have to do.  They do not see how just hearing words like take out or delivery causes your pulse to race as the fear of pain grips you tightly.  
       Sure, they hear the odd compliant about take out and that random moment during a particular flare up where you can not keep the pain from crossing your facial expression.  Since they do not see it or feel it the way you do, they do not understand.  
       Over the course of the last few weeks I have noticed that around my husband and children, even close friends I hide most of my pain and emotions. 
       Honestly people who complain all the time are no fun to be around.  So why would i want to be that person? 
       As bad as it sounds I really think that after so much time has passed it becomes less of a big deal to others.  Mostly due to them not seeing or feeling what we deal with every single day.  But also its 'old' news.  Its like a broken records we can not turn off, but somehow others found the headphones and can ignore it if they want too.  Now I do not think people do this on purpose its just human nature.  
      I would give anything to be able to forget about my condition, even if its only for an hour or two.  Sadly, wishful thinking does not help.  
      Okay smarty pants.  You say.  What does help?  Two things help me. 

• My faith in my Heavenly Father. 
• An annoyingly positive attitude. 

     I think having my faith speaks for itself.  I am not ashamed to say that I am a member of the Church of Jesus Christ of Latter Day Saints.  LDS for short.  Everything happens for a reason and even when I can not see it in the moment I know trials make me stronger, preparing me for better things to come.  

     Now having a positive attitude is one thing.  Having an annoyingly positive attitude is another.  I heard a phrase once that said smile even in your darkness moment and keep it until you feel it.  On days when I am emotional or sad or depressed I become the most annoyingly positive person.  I make jokes, laugh and try my best to smile as big as I can.  Eventually it sticks and the moment passes.  

     So I leave you with this advice: 

• Smile - no matter what
• Laugh - at everything
• Cry - short bursts.  I try not to give in completely but small controlled outbursts should be okay. 
• Love - someone, a pet, yourself.  Have love in your life in some way, so in your darkness moments you have something/someone to hold onto.

         #Alwayskeepfighting

    
      

Frustration with IC!

My favorite cooking TV show. 

             I am a huge lover of food.  Due to this I have a healthy/close to unhealthy obsession with TV shows that revolve around cooking and competition.  Hell's Kitchen was the first one to catch my eye.  
            I mean come on, a guy who freaks out when they do something simple wrong while he is trying to make them better chefs.  Not to mention the prizes at the end of each season.  Yes, I know how the shows really work once they end but I like the naive idea that happily ever after occurs for each person.  
            I could list a thousand of the shows I watch now that have similar concepts, yet my newest favorite show in this category is called Worse Cooks in America.  Basically two chefs that are world known select 14 people from the worst cooks around to compete for $25,000.  The chefs divide the group into two teams, red and blue, for a sort of cook off at the end showing their new skills.  I love it.  It not only shows me recipes I can try for my family but basic cooking skills that I have yet to learn.  
            Now you may be wondering where is the frustration you promised....right here.  The problem with loving cooking and cooking shows now that I have this condition is I know without question I could never be a part of a show like these.  The likelihood of actually going on this type of show is already slim, I know that, yet the overwhelming idea that I could not apply to be ever sank in yesterday as I watched a rather funny episode.  
            There was chaos in the kitchen on the show.  
            People dropping things, setting fire to things, burning things...the list goes on.  Then came my realization as the chef focused in on one particular person and yelled really loudly. 
            "Taste!  Taste!  Taste!"  
            With those three words my heart just sank.  One of the first things I learned watching Hell's Kitchen is that you can not make great food unless you taste it.  You have to taste everything.  If you do not taste you can not tell how much seasoning to add and your food can end up too salty, too sweet, too spicy..well, you get the idea.  
             Since I got diagnosed with my condition I have not tasted any food I have made for my husband or kids.  I have been eye balling it as they would say.  My husband is great as giving good advice and as yet has not stated my seasoning is bad.  Of course 13 years of marriage also gives me great insight as to what he likes and what he does not.  
             That being said on the TV shows if you do not taste your food, you do not stand any chance of making it very far.  So my heart sank and my frustration arose.  
              Honestly as the realization hit me it was almost like I was back to day one of my journey: 
               Why me?
               I can't handle this...Can I?
               Can't someone else deal with this?
               How can I cook anything now?
               Can I eat anything good now?
               Am I doomed to eat nothing but plain crap my entire life?
               
               I admit I started to wallow.  
               Cooking shows are amazing and even though I am not very good at cooking I love to try.  And I love to bake.  I make English Cheese Scones all the time and my kids, the hubby and I all love them.  I love to make cookies and muffins and cupcakes.  It felt like a part of me got ripped away.  Then I remembered something.  
               April 22nd. 
               April 22nd was when I found out about my condition and made my first blog post.  April 22nd was the day my entire life changed and that was almost 6 months ago.  
              6 months.  
              And though I would love to say I've eaten take out/delivery everyday in that time frame I know its not true...although I know it has been a good few days.  
              I have been cooking food that I like and surviving for 6 whole months.  Clearly my 'bladder' friendly food list is a lot shorter than what I used to eat but I was never one for spicy food anyway.  Thinking about it I realized that before my food tended to be a little bland, and even though I could not just use whatever I did before I had new options that I had never tried before.  

•    Cumin
•    Chives
•    Caraway
•    Carob
•    Anise
•    Allspice

             Admittedly some of these I have heard of before I have just never tried them in a recipe or even know what they are used for.  

             After wallowing and my realizations it came to me that I can handle this.  I need to look at it like Gordan Ramsey (and the other chefs) are giving me a challenge.  You must create a weekly menu for you and your family using the following ingredients.  And since they are all bladder friendly you can taste it and make sure its yummy.  

             

             Challenge accepted!   

              #Alwayskeepfighting  

Life is already complicated!

                                              

            Life is already complicated without any medical condition.  Think about what you have dealt with in your entire life, before you were given the diagnosis.  For me its been a lot.  
            This year I turned 33 years old and it was 3 months before my birthday that I found out about my condition.  I will not bore you with the details of the life that came previously but I can tell you, like everyone else, I had good years and bad ones.  I had extreme highs and extreme lows.  And without question a few very very rock bottom moments.  
            But there is a catch.  
            I am still here.  No matter what I dealt with before I made it through.  Life was complicated.  Like a million piece puzzle that you have lost some pieces for.  Its frustrating, annoying, sad, happy, exciting and its yours.  There is no set time frame for the puzzle to be completed so theirs no rush, but we do anyway.  
           If this condition has taught me anything its that we need to slow down.  We need to take time out of our complicated lives and look after our health.  Sometimes, like with me and this illness, we have no choice.  We are forced to stop and reevaluate our lives, eating habits etc.  
           Sure, this condition is serious but you know for me it came as a blessing in disguise.  I never would have stopped.  I know I would not have.  My life was complicated in many ways, yet this condition did not make it worse.  In fact I sometimes thank my condition for allowing me to take the time I needed to focus on the bigger picture and enjoy the life I have.  
           This condition does not stop our lives from being complicated.  And I admit some days it does feel like its adding more pieces to the puzzle rather than taking them away, but you know what that does not mean we have to fall into the trap of blaming our condition for not doing things. 
           We can not use it as an excuse for things.   Realistically there will be days where it is a real reason and not an excuse but you have to be honest with yourself and others.  
           Is this really a day where I can and just do not want too?
           Is my pain really strong enough to hold me back from my goal today?
           Have I tried everything I can, to do want I have to do today?
           Do I control the condition today or does it control me?
           Honestly there have been days for me where the pain has been there, yet low enough on the pain scale that I was still able to get at least my minimal amount of things done that I wanted to do.  And there have been other days that I know I just need to rest.  
           I refuse to let my symptoms dictate to me what I can and can not do.  And even though some days I have no choice, on days when I do I will not go quietly.  I will fight with every ounce of my being to reach my goals and do what I need and want to do.  
           Everyone has a different puzzle and it is up to us to find the right way to put it together, however we are all in the same room and reaching out for help is nothing to be ashamed of.  If you need help of any kind reach out for it.  
           We are all in this together. 

           #AlwaysKeepFighting

          Alison 

Emergency Preparedness and IC!

Are you prepared?

      I consider myself to be pretty prepared for any type of emergency that can arise.  And by emergency I am talking about floods, fire, storms and earthquakes.  Now I am not saying that all my preparing is perfect and that I still do not have things to work out but I feel very confident in what I have got done already.  That being said I realized something in the passed month. 

      What happens when the emergency arrives and you have a condition, like IC?  Or any condition for that matter? 

       As part of my preparedness canned goods and food storage are a big part of it, yet I realized with my condition most of it I will not be able to eat if there was something going on.  

       I was in shock and honesty a little angry.  

       I had gone to all the trouble of making sure I was prepared only to realize that I had not included my condition in my planning.  This will undoubtedly make the preparing harder, yet I am willing to research and see what I can do to help myself as well as my family.  

      Here are a few steps I have taken already to resolve the situation: 

• I buy a package of Uricalm, a medicine to help with the symptoms, at least once or twice a month.  This ensures I have a good supply on hand at all times so if a situation does come up I have at least some relief from eating questionable foods. 
• As I find food I can eat, food lists are created so that I can keep track.  This enables me to purchase dehydrated items/food storage that I will be able to consume with my family in an emergency situation. 
• Water is a huge staple when it comes to food storage/preparedness and I have to admit so far this is where my stock fails.  As part of my new planning strategy I am hoping to have a good supply available to us at all times.  Right now I drink around 90 oz of water per day and if you include what the family drinks the amount can rack up very quickly.  In an emergency I would not be able to drink as much due to rationing but still the amount we would need is crazy if you do not stock up.  

         These are just a few ways I have found to prepare while having a condition.  Now I am lucky in the fact that the medicine that works for me on flare ups is something I do not need a prescription for.  For those of you that need a prescription it will be harder in an emergency situation.  Yet there is always something you can do.  

          I believe that situations are made hard so that we can come out the other side stronger than ever before and I know having the knowledge/planning ahead will help us a lot if something should happen.  

          Now I know that people read about being prepared and think I am not going out and buying tons of flour, sugar and other things it will cost a fortune.  That is true but only if you do it all at once.  The stock of canned goods and food storage I have has been slowly gathered over the course of years and honestly I started by simply adding one can extra each time we would do a grocery run.  Say you need 2 cans of Carrots, or whatever your family likes, instead of buying just the 2 you get 3.  You will be amazed how fast your collection grows.  

          No matter what situation may hit our area/you or your family it is always good to have a plan in place.  It is never too late to start the planning process. 

          

          #AlwaysKeepFighting

       Alison  :) 

BBQ Fun with IC!

      With celebrating July 4th, Independence Day, yesterday I was wondering how holidays have changed since people were diagnosed.  Before I was given the title as a IC patient I loved all holidays.  Way too many calories, sugar by the bucket load and the perfect excuse to sit on my butt and do nothing except relax.  
       This time around things are different.  
       My husband was working so it was just the kids and I, which we are used too so it was not really that different.  The only thing that made a big difference was how I prepared our food and what I had compared to the rest of the family.  
      I made hamburgers with vegetables instead of a bun to help my husband's low carbs diet and since we are trying to eat healthier together as a family.  I did not buy pre-made patties, I had to shape them myself which was a huge challenge for me but turned out great in the end.  
     The kids and my husband were able to have ketchup, garlic salt and basil on their patties, where as I just had sea salt, however this holiday I did not feel like I was eating a completely different meal to them. 
     Honestly since I was diagnosed I felt like every meal was spent with me eating something completely different to my family and leaving me out in the cold, sort of speak.  The last week or so has improved immensely as I have started to grip more on what seasonings I can have and how I can eat the same food just prepared in a different way.  
       Here are a few things that I have noticed/done differently: 

• Use two bowls/two pans to make the same food but with different seasonings. Definitely not hassle free but a huge improvement to eating something completely different and feeling left out.
• Knowing a little ahead of time what you want to eat and going with it.  If you are preparing/making the food for the entire family then you pick the menu and include foods you can adjust to your needs and theirs as well. 
• Food planning is also still a huge help as it enables you to by pass all the foods that would cause a flare up.  This would include foods that are high in sugar, such as take out and desserts. 
• Finding some kind of indulgence that gives you the feeling of 'cheating' but with a lot less side effect.  I personally have found that a little vanilla ice cream or vanilla shake gives me the feeling of having a some what normal eating style, complete with dessert, but without the pain for days later.  

        Above everything this holiday has taught me that it is possible to have a great family meal, including dessert without feeling like your causing hassle or adding stress to it.  Just because we have a condition does not mean it has to be a burden.  And remember: 

        #AlwaysKeepFighting 

Camping with IC!

          This past week I was able to have some fun with my friends and all our kids camping for the night at a camp ground close by.  Even though I did not sleep at all well on the hard floor of the tent with my six year old son squirming around like an octopus and our family dog, who is almost as big as my five foot four height, moving around every few minutes it was a great time.  

         The only concern for me was again the food.  Most people think of camping and they think the following: 

• Burgers
• Hot Dogs
• Foil Meals
• BBQ
• Corn on the Cob
• Smores

         I can deal with protein, veggies and even which starch I can consume....desserts on the other hand are my Achilles heel.  I was able to prepare chopped up cucumber, mild cheddar cheese and small packets of tuna as my main meals.  

         I prepared to be tempted by the smores on an epic level and I admit I came very close to having one.  My best friend was a beacon of seriousness and helped me stay strong.  I decided on a compromise and ate just a yummy crispy marshmallow out of the camp fire.  

          I knew having time outdoors would limit the amount of water I drank over the course of the day/night and it could cause problems, especially in the hot weather we have been having recently.  Usually I drink around 92 oz of water per day and camping limits that amount as it is either not accessible or it would take way too many bottles to carry around.  I was able to drink about half that amount but I did suffer a little because of my low amount.  

          Over the course of finding out about my condition I have found out about a few products that are over the counter which can help with the symptoms.  The one I have tried and had success with, especially while camping, is called Uricalm.  I was able to find it at the local store and did not need a prescription for it.  It is meant to calm the feeling of needing to go and the pain when you pee.  

          Overall my trip was a great experience and I learned a lot about what I can take to help ease my symptoms and also what foods I can take along with me on trips that enable me to release the stress of others having to prepare separate portions for me.  

          #AlwaysKeepFighting

The Roller Coaster We Ride With IC!!

Bat Ride at Lagoon in Utah

        I have come to the conclusion that living with a condition like IC, Interstitial Cystitis, is similar to being stuck on a roller coaster going around and around and around. 

        My journey has been wild and something like this: 

• The cranking sound of the click, click, click as the seat I am locked into drags me closer and closer to my diagnosis. 
• I reach the top and there is a moment of pause for it to sink in. 
• Suddenly I drop as the stress, pain an depression seem like a distant dream as I now have a name and a way to control my symptoms.  A drop of relief. 
• Then another slope upward as the battle begins. Finding out what triggered my condition and how to slow it and then remove most of my pain. 
• There is small reprieve of pain free bliss, where you can move, bend and stretch without any problems.  
• Then another twist in the coaster and I am upside down back in pain but holding on to my new lease on life.

         Before I know it I am back to the beginning loop again.  

         I only recently started to like roller coasters at the local amusement park but the roller coaster of life can sure get tiresome sometimes.  

         After my cruise trip I was able to get my condition under control, around 95%.  And then the passed week or so my pain came back due to changes in my diet again.  I thought I was doing so well and got kicked down when I started to stand straight.  Hence the roller coaster. 

        I feel I am heading back up on a high but since this is a life long condition I know sooner or later it will twist, turn and/or pullet again.  The point is that we can never predict what will cause us pain but we can control how we react and how we deal with it.  

        I try to be a positive person but after over a year and half of pain I found myself depressed, angry and basically a hermit.  Recently I noticed I was more frustrated by the entire thing rather than depressed or angry.  I refuse to allow myself back to the position I was in before, because quite frankly I hated that person I became.  Everyone who knows me understands that I hate being mean, I hate being angry and since my family has a history of depression I pride myself on being positive in any given situation.  
  
        Just keep in mind that no matter what part of the roller coaster you are on it will change.  Change does not have to be bad, scary or something that ruins all of your progress.  Expect change will come in many forms, in ways you can not predict or prepare for and do your best to be you.  Nothing else matters.  If you are not happy, choose to be happy or do something about it.  

        Above all #AlwaysKeepFighting   

Intimacy and IC!

*Disclaimer: This post covers a subject that is not suitable for anyone who is underage or sensitive to graphic information regarding sex.  Read at your own discretion. 

       A few days ago, June 1st, I was lucky enough to celebrate our wedding anniversary of 13 years.  Back in 2002 I married a wonderful American man, who chose me to be his bride.  Over the course of those years we have been through a lot and I thought that we could survive anything.  I was right.  

       Anyone with IC, Interstitial Cystitis, or chronic pain of any kind can understand that during certain times our sex drive goes from pretty much 1 to nothing at all.  It is incredibly hard to be intimate with your other half when pain is taking over your entire day and night, all the time.  

       When my pain started around April or May last year, 2014, I thought I had just pulled a muscle or maybe just eaten something that did not agree with me.  As my pain got worse, doctors started thinking I was crazy and my poor husband just did not understand.  The year started off great and because of my health and lack of sex drive our relationship became one of few and far between intimate moments.  

  

        Ask any person who suffers from depression how easy it is to feel sexy, even with lingerie, when you feel so sad and angry all the time.  My husband and I went from a few times a week to maybe once or twice a month.  

       Anyone who says sex is not a big part of a marriage is either not paying attention or single.  Intimacy for a man is through sex.  Meaning that he feels closest to you during foreplay, the act itself and those precious moments after.  Some men, not all, experience sex or the releasing of the sperm and then physically hurt, actual stomach pain, if they go a long period of time without release.  

       Now I know a few wives and their husbands and the idea that you can cause them real pain by not fulfilling your duty to them is just heartbreaking.  I would never in a million years what to cause my husband any kind of pain, especially when its something that I can help with.  

      Of course now we are getting into the realm of alternative means of release for your man.  (I can only help women in this situation since I am not a man and do not have any experience in that department).  Chronic pain and the mental toll it takes on us is not something to be taken lightly, however being in a serious relationship means that our mood affects not only us but also those around us.  If we are unable to take care of our partners needs then we need to find ways to help them.  

     Here are a few suggestions: 

• Starting with the basics would be the old fashion hand job.  This is a way for you to make out and help your partner release without having actual sex.  
• Blow Jobs are something that men love and most women hate.  Just remember in this situation we are taking care of our partner and helping them during our time of sadness, depression and/or pain.  
• Lap dancing.  Depending on your range of motion, level of pain etc you may not be able to try this but on a day when you are feeling up to it shake that thing and make your man happy. 
• Lingerie is something that can help your mood and give you that feeling of sexiness.  In other cases it will help your man more than you, but again remember we are helping them in our time of pain.  
• If you are feeling up to having sex and not just fooling around try different positions.  With our condition having a man's full body weight on your stomach is not usually a good idea, especially if your a little achy.  Try being on top or the from behind position instead to help remove the extra pressure.  
• Talk it out with your partner.  Discuss what options you are willing to try and which they are most comfortable with.  Communication is key to any relationship so you should be able to talk to your partner about this.  
• Be prepared to come out of your comfort zone.  I do not mean go try crazy things you never dreamed you would but know that with your life style change diet wise, you may need to change how you look at other situations as well thanks to our condition.  Do not fear change.  Embrace it. 

     No matter what you try just remember for some of us it took a while for a diagnosis so you will need to try new things and maybe google for ideas on ways to help your man out while you deal with it.  

     Over the course of 13 years of marriage I have learnt that people who say it is 50 - 50 are wrong.  You have to give 100% to your partner.  If you love them and do not wish to cause them any pain, sadness or discomfort you have to find ways so that both of you can push through this condition and the symptoms.  It really is a team effort.  

     My husband and I have had a great sex life and thankfully the older I have gotten the more my sex drive has kicked into gear.  Before I was diagnosed I could not help but be upset at the fact that I finally got a sex drive only for it to stall thanks to my pain and depression.  I learned to take comfort in the fact that I could still please him and deal with my issues at the same time.  Thankfully now my condition and several surgeries are under control we are getting back to the way our sex life used to be.    

     If you take anything away from this post I would hope it is the fact that things do get better.  Even if you do not feel in the right mind set or right place there is always something you can do.  If you can not control your own happiness try focusing on the happiness of your partner.  Making them happy will in turn cheer you up and enable you to see that it may take time but you will reach happiness for yourself in the end.  

    Have fun making each other happy.  

       

New Goal Reached!

         The passed few days my life has increased in such a positive way that I just can not contain my happiness and excitement.  The picture above should give you an idea on what I have been up to but I will spell it out.  

        This week, going into week 6, I started rollerblading with the kids after school and their chores.  

         Honestly I have not been on roller blades for a long time...like 15 years, with a small bit of practice around 8 years ago when my daughter was little and I was pushing her around in the stroller a little.

         As expected the beginning was unstable, shaky and seriously embarrassing.  I was very happy that only the kids were around.  That being said after a few minutes I got my groove back.  At the end of the time, around 20 minutes, my feet and ankles were hurting like crazy but it was worth it.  

         Yesterday was my second time around and it was so much better.  I lasted around 30 - 40 minutes and even though my feet still hurt, after a few minutes it went away and I did not notice it anymore.  

          After almost a year and a half in pain the idea that I could even think about doing something so physical without worrying about the pain was just mind blowing.  I could not comprehend walking at a steady pace, let alone riding a bike or putting back on roller blades.  

          I mean sure for my first thing to do when I started feeling better I could have just walked around the block but really I love rollerblading.  I have since the first time I tried doing it back in the 90's.  I never thought I would get around to doing it again and I am so happy that I am able to do it now.  

          I know I still need to watch my condition and take care of myself to keep this good momentum going but in this situation we need to celebrate the little victories.  For me this is a huge victory. 

           #AlwaysKeepFighting
           
           Never give up.  A rainbow could be around the corner.  Today I saw the rainbow.  

Week 5 Update!!

Miami, Florida

      Wow, honestly I can not believe its been five weeks since this all started.  What a crazy few weeks its been.  Let's review what I have learned so far in my journey. 

1. Water is my favorite thing in the world.  It has come to be the only thing that keeps my pain in check.  (As I've said before as soon as you start aching grab that water bottle and chug)
2. Dessert is not the enemy.  Find small indulges that you can have without suffering.  (I am able to handle rice pudding, home made, and cheesecake, in moderation)
3. Trying new food is not something you should dread.  Just remember that a few bites of something should be enough to tell you how your body is going to react.  Eating an entire cheesecake, maybe not the best option. 
4. We are not broken.  Sure, we have something that we will have to deal with for the rest of our lives, but we can still have a great value of life.  Do not let the pain win.  #AlwaysKeepFighting. 
5. Find your voice to the point of helping your condition.  Do not use this new found voice to drive loved ones to insanity.  They will help you, you don't have to bring it up every time you want something at their house. 
6. Exercise.  This does not just mean running or going to the gym.  A small walk around the neighborhood or just doing chores around the house will help.  The more you move, the better you will feel. 

   *Remember these are not necessarily in the order that you should use them.  

   Overall I have come to the point where, hopefully, I will not have to have medicine for my condition.  If I can continue to control it with food then its a win.  I know that some people are not as lucky and for those of you who are in that place I am so sorry for you.  But like I said, we are not broken.  

   Actually let me rephrase that.  We are not broken, we are just bent.  Sure, we're not like everyone else but we're still a team.  Suffering from the pain for as long as I did and the depression and anger that followed, I understand why people would want to give up or who have been so run down by it that you can't see the rainbow through the storm.  

   Well, the rainbow is there.  I promise.  

   In dark situations like that I feel that my faith comes into play a lot.  And I'm not one to keep track or anything, but I sure know that during my worst times I gave my heartache over in prayer and for me it helped a great deal.  

   On a happier note, during my grocery store trip today I noticed something.  I noticed that I did not look twice at the Diet Dr Pepper or chocolate bars around the cashier.  On the cruise I noticed that I only craved those things when I was feeling sad about missing my family or when I started to get ship crazy.    

   I was not going to say this, in case I jinx it, but so far I'm down 10 lbs.  I only went up about 2 lbs during the cruise due to the amount of cheesecake :)  

  Anyway, I think I have finally found my rainbow in the storm and even though I still have the odd pain I don't worry about it.  I just deal with it straight away and then forget about it again.  I really do feel like I'm becoming me again and I like it.  

   #AlwaysKeepFighting

Cruise Recovery!!

Example of a breakfast

     Well, it's official.  It's been over a week since I got back from the cruise.  This post I would like to talk about my food challenges and achievements while on the cruise. 

     In my previous post I talked about how nervous I was going on a ship that is all you can eat, 24/7 with a mass amount of sugar and yummy things that I knew I was not going to be able to eat.  Here are a few examples of the food I was able to eat while on the Carnival Cruise ship Victory. 

Example of breakfast

Example of lunch

      Honestly the first few days on the ship were following the foods I knew I could eat without a problem.  (Hence the Pear you see in every photograph)  But I felt I wanted to also test the water a little and see what things I could indulge in without much consequence.   The ham and cheese sandwich you see above caused the biggest problem.  In the end my go to lunch ended up being the one below with the chicken nuggets and fries.  

Example of a lunch

   Once I had determined which foods I could eat, with no issues, I felt I was able to reach out a little more and try new options.  During my time on the ship I worked out the following: 

• Even though I could eat Bananas before they are no longer my friend, whether in something or by themselves. 
• Bland food is my friend but I can add some salt and seasoning I just have to be careful. 
• Trying new food is not off limits because of fear.  If you try something and it doesn't work that's fine...next time you know better.  
• If you do start to have symptoms drink as much water as possible to flush out your system. 
• Going on a vacation is great but you still need to remember to drink enough water. 

  One of the main problems on my trip was my lack of water intake.  On a couple of days I found myself starting to ache, even though I had been watching my food very closely and staying within the limits.  I worked out it was due to the amount of water I was drinking...or lack thereof.  

   Another thing that I noticed is that when eating out I have to ask questions about how the food is prepared and must face my fear of asking for something to be substituted.  I admit that I'm terrible at speaking up, especially when its something along the being difficult line.  But as my best friend put it, its my health.   

  Would I rather eat whatever and be in pain or speak up and not deal with it?

 

   Honestly for me it depends on the day, but I understood what she was trying to say.  I can not rely on other people to speak up for me in this situation.  I need to find my voice and let people know that I have limits and how we can get around it.  If I say nothing then eating out, whether at someones house or at a restaurant, will always be something I dread.  Now that being said I don't want to be the kind of person who goes on about my condition all the time and there for people decide they don't want to invite me over anymore.  

   And again something in my life comes down to balance.  I suck at balance.  That being said I won't give up.  As a very smart man, Jared Padalecki, said Always Keep Fighting.  

  #AlwaysKeepFighting

https://www.facebook.com/JaredPadalecki?fref=ts

Decisions Decisions!

      Tonight is the night before I leave town for a week on a cruise to the Caribbean with my best friend.  Nothing says mothers day/girl trip like alone time away from the kids and the husband.  Do not misunderstand we both adore our families but as every parent knows breaks are not only nice, they are essential to keep our sanity.  

    That being said I must confess that since being diagnosed I have been a little nervous about this trip.  Cruise ships are known for their vast amounts of buffets, most of which I am certain have large quantities of chocolate...Oh dear.  I am not just nervous about the food but also my symptoms.  

    What if during our great time I have a flare up?  

    My husband said it best when last night he said if it happens, it happens.  You can not very well just leave the boat and come home simply because a flare up occurs.  So I am trying to alter my mentality to include worse case scenarios and am packing extra Advil or whatever helps my symptoms to make the process easier if something does come up.  

    This also got me thinking about other eating habits that we as a country have that change drastically when we are given this type of condition.  Here are a few examples I have experienced so far: 

• Take Out/Delivery/Restaurant Eating - Items that I used to eat a lot of or love the sound of are now completely off limits.  This makes the idea of going out to eat not only unappealing but also saves us a lot of money throughout the month. 
• Dinner at a friends house - I am lucky to have a best friend who does not mind changing up her recipe to accommodate my new requirements, but when it comes time for special gatherings later this year, such as Thanksgiving, I can tell I will be preparing my own food while the family eats the regular stuff.  

   So pretty much anytime you are not the one making the food a red caution flag will pop up and you will be hesitated to partake.  I am still in the process of adjusting to food that will help ease my symptoms but hopefully as time goes on I will be able to eat at least a little of the foods that I love.  

   Here is an example so far of what I can eat: 

• Peanut butter toast
• Pears
• Tuna from a pouch
• Canned vegetables - Sweet Peas, Green Beans and Carrots.
• Chicken - cooked on the stove with a small pinch of salt added.  (Can't use garlic salt and I love it on everything)
• Turkey - I have cooked ground turkey again with a small pinch of salt. 
• Fresh vegetables - so far I have tried Sweet Potatoes, Zucchini, Celery, Cucumbers and baby Carrots.  All have worked so far. 
• Rice pudding - only in small amounts and with pumpkin spice as well as less sugar than I would normally use. 

    The list is not as wide variety as it used to be but like I said, I am still in the calming my bladder down phase.  Honestly the food I eat right now is pretty bland and boring but hey I am losing weight and my pain is almost gone completely.  :)   I will take it.  

    I will update when I return from my trip but until then Happy Mother's Day to you and keep safe.