30 Day Chronic Illness Challenge

I came across this idea on Instagram and thought I would give it a go.  I have been in extreme pain since my cystoscopy and this whole IC thing wears me out and makes me anxious and depressed sometimes.  Well this blog has been a huge method of therapy for me and I'm so glad I'm doing this.  This challenge is a 30 day challenge to think about your feelings both physically and emotionally and put it all down in writing and out of your already scattered mind.  I am posting Day 1 and Day 2 today because I didn't get to post yesterday's because I was just feeling too bad. 

Please understand that I realize that there are many of you that will find this boring and may take this as me being a whiny little woman.  However, my illness has changed my life.  I live with chronic pain and it does not go away.  I cannot just forget about it and move on.  This is how I am coping with it.  I also realize there are some of you who are also suffering from illnesses and pain or have someone in your life that is.  I hope you can benefit some from this challenge.  You could even join in if you would like!!  

Ok..here goes!!

Interstitial Cystitis Awareness and my True Care Experience.

As I have said in previous blogs, I have been diagnosed with IC.  Well I haven't had the greatest experiences with doctors helping me.  They all tend to pass you off when it comes to an IC diagnosis.  Finally, after about a year and a half, and finally gaining health insurance, I was able to visit a specialist that is perfect for my condition.  I went to a UroGynecologist.  I had been to see a Urologist but that experience was not pleasant.  She was rude and quick to get me out of there as she seemed very busy.  It seemed like I was not important and she was too busy so she sent me to a Physical Therapist.  That experience was also not comfortable.  The therapist herself was wonderful.  However, my pain increased each time I went.  I stopped going to her.

After visiting a couple of websites geared towards Interstitial Cystitis such as http://www.ic-network.com  and other sites, I was directed that I needed to see a UroGynecologist.  They seem to be the only doctors that truly specialize in Interstitial Cystitis.  They are hard to find, however.  I managed to find one about 40 mins. from my house so I quickly made an appointment.  After a wait of about a week and a half, only because of my husband's work schedule and needing him to be home for the kids, I was able to see my doctor.  The experience was AWESOME!!  First of all she was young and attractive with no accent that I could not understand.  Her age was a concern at first because I wanted to make sure I had a doctor that had plenty of experience.  But quickly I learned that she really seemed to know her stuff.  She spoke in doctor lingo to her assistant who was taking notes on the lap top and then translated everything to me so I understood it clearly.  After a PAP and exam which were not as uncomfortable as others that I have had, she asked me a pleathura of questions about my symptoms and went over what she had discovered in her exam.  I just remember feeling so comfortable and taken care of.  I felt cared for for the first time since all of this began over 2 yrs ago.  We have a treatment plan now.

I have to do a voiding diary for 2 days and record when and the amount.  Pretty strange but whatever.  I have to keep eliminating "trigger" foods that are bladder irritants one by one until they are all out of my diet.  This will allow my body to heal some and then I can start to add foods back into my diet one by one and find out exactly which foods are triggering my pain and other symptoms.  In 2 weeks I have to have a cystoscopy.  This is when they will put a camera into my bladder that will determine how bad the condition is.  From there we begin real treatment.  I am looking forward to moving on with all of this.  I know that this is incurable but I also know that there are forms of relief that will bring me some comfort.  This is what I have been waiting for.  Care.  True Care.

Sorry if this is a little too much information on the personal level, but that's what my blog is about.  My real life.  Well, this is it!!

love to all
Lauren

Painful Day.

I have had a very rough month with my IC pain.  Today I feel like giving up.  I'm sitting in my bed under my heating pad as usual for this time of day.  I need to be up cleaning and interacting more with my daughter.  But I just can't.  My pain is at about a level 8 right now.  The stabbing pains that I get periodically are constant this morning.  They aren't stopping.   I've taken all of my medications and they don't even seem to work anymore.  I am feeling a range of emotions. 

 I feel anxiety.  I have so much to do and want to do and this pain and urinary frequency keep me from doing so many things.  

 I feel sad.  Why is all of this happening to me?  Why do my daughters have to see their mother sitting in bed so often and getting grumpy because the pain has worn her out?  I am only 36 years old!!!  This should be a healthy time in my life when I can enjoy doing outside activities!!  I used to enjoy riding my Schwinn beach cruiser around with my family who all love to ride bmx.  We would all go to the skate park together or for a ride around the lake.  Not anymore.  I can't even make it to the end of the street before I get shooting pain in my pelvic area.  

I feel ANGRY.  I want my life back!  I can't have a sexual relationship with my husband.  Well not a good one anyway.  I try to just as I like to put it "sacrifice" my pain so I can make him happy as often as I can on better days.  He is very supportive but I know it's not exactly what he had in mind when he married me.  We had a great sex life and now it's once a week if things are feeling ok.  Mostly, it's once in a blue moon though.  He makes remarks sometimes, which I know are meant as a joke, but they hurt.  I want him to feel fulfilled and happy.  But the pain that follows is nearly unbearable and worsens my constant pain for days.  It's almost like: Ok I'm going to have sex today but I will be bedridden for the next 4 days.  What do I have planned for those days?  It's miserable and frustrating.  

I feel under cared for.  It's terrible going from doctor to doctor to find help and having them look at you like this is all in your head and having them tell you they really can't help you.  The urologist I went to even told me it was pelvic floor dysfunction, which I am sure it's not.  She sent me to physical therapy and that just made the pain worse.  My current doctor did diagnose it as IC and referred me to a UroGynecologist. They tend to specialize more in the pelvic floor conditions including IC.  But I have been bleeding for a month and waiting until that ends so I can make an appointment with them.  I just want to find someone that understands my pain and suffering.  Because I am suffering and so is my precious family!  

God, I just want to scream!!  The pain is so bad!!  As tears roll down my face, I can only pray at this point for God to ease this pain.  Lead me to someone who can actually help me.  Give me the strength I need to get through this day.  And the ability to understand why I am going through this.  I know you have a purpose for this.  

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.