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.