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.

Living with IC

I found this interesting and thought I would share:


 http://www.womentowomen.com/urinaryincontinence/interstitialcystitis.aspx

Intro to me

Well hi there!  My name is Lauren and I am a mother of 3 girls.  9 yr old twins and a 3 year old.  I have a wonderful husband who I love dearly.  My life may seem perfect as I realize that I am truly blessed.  However, as we all know, no life is perfect.  I have my own problems as everyone does.  I set up this blog as a way to talk about it all and get it out as I tend to bottle things up and then it just explodes and I look like a crazy woman!!  I have always kept journals so this seems natural.  Now having people actually read these is a little unsettling.  But here we go.  I don't even know if these will be read.  In that case I have a new way to keep a private journal!!  It's a win win for me :) 
     I think of myself as a good mother with a lot to learn.  I think of myself as a good wife but not a perfect one.  I'm not Donna Reed or the perfect housewife.  I am emotional. I am a little crazy.  I lose patience.  I laugh at things that are sad sometimes.  I cry for no reason sometimes and that feels wonderful.  I get extremely overwhelmed as a mom and wife ALL the time and then get mad at myself for it.  But yet I am very proud after all that I have been through to be where I am now and I think I am doing a good job at what God has given me to do.  I do my best and that's all I can do right?  
     Ok, here is my medical issue.  Well I should say issues.  I have been diagnosed with general anxiety disorder and have had that since being a teenager.  I have recently been diagnosed with chronic pelvic pain syndrome and interstitial cystitis.  The pelvic pain started during my pregnancy with my 3rd child who was a very large baby.  It progressively got worse and about a year and a half ago it became so bad that I could not get out of bed. The pain was constant and I finally decided I had to seek treatment.  With no insurance and not much extra money as we are a single income household, that was not an easy road to go down. After starting out with an OBGYN at a low cost clinic and ruling out a couple of possibilities for the pain, she suggested surgery.  I decided to get a second opinion and found myself at another clinic that was able to send me to get a low cost ultrasound of my pelvic area.  Everything came up normal there.  They told me I could possibly have IC. Interstitial Cystitis for those of you who are not familiar is a chronic bladder condition that is hard to diagnose and hard to treat.  It is also incurable. www.ichelp.org Anyway I will refer to it as IC throughout this blog.  Well after a year and a half of going to doctors and emergency rooms with no insurance I was just forced to manage the pain only.  I have noticed that doctors do not like dealing with IC.  They are all very quick to pass you on to someone else.  And when you ask for pain medications they look at you like a drug addict.  That was frustrating to me because I really was in extreme pain and there was nothing anyone could do about it.  I had cut out a lot of bladder irritants but the pain pretty much hung around through everything I tried.  Finally a year later we were able to get insurance through my husbands company and I went to see a urologist who told me I could possibly have IC but it may also be pelvic floor dysfunction.  She sent me to a physical therapist.  I am in the beginning stages of that process now.  No relief so far :(  My primary care doctor who was also treating my anxiety told me he was sure it was IC and to go back to the urologist and request a cystoscopy.    http://www.webmd.com/a-to-z-guides/cystoscopy-16692  Not sure what happened to my font here but oh well...I tried to fix it.  Blah!!! 
Tangents are another thing you will see on my blog!!  Ha!!  Anyway, I am waiting to make the appointment for that.  It costs money that insurance will not cover all of so I am waiting to come up with that.  That will give a firm diagnosis of IC.  That doctor also decided to take me off of my anxiety medication all together and made me feel like I was beneath him.  This was a doctor in a clinic that I began to see during the time when I was uninsured.  I think his respect for women was a little non-existent.  I just saw a new doctor yesterday and was very pleased.  My 3 yr old was with me and he was very patient with her as she was climbing all over the place and kept chatting while he and I were talking about my condition and treatments.  I am laughing just thinking about it!  Silly Sophie.  That's her name.  You'll get to know her pretty well.  So the new doctor, who I will call Dr T., put me back on my anti anxiety medication and also added some things he thought would help with both conditions.  He gave me a prescription for lexapro, which is for depression and anxiety and works very well when combined with your regular anxiety medications.   He also gave me a strong anti-inflammatory which combined with the tramadol I have been on is supposed to work well.  So today is day 1 of this treatment route.  I guess I started this to keep track of how well the treatments are working and how I feel day to day.  Can't hurt right?  As I said, no one will read this I'm sure.  But if you do and you find it remotely interesting then thank you for reading and if you want to send any comments I think that you can.   Right?  You can comment on here, I assume.  This is all new to me.  
     By the way, I am 36.  I adore my kids and I'm going to post some pics of my family because I am proud of them and they are a part of me.  After all, this is designed to let you, any readers that may be out there, let you know about my life..."The Life of Lauren" :)