2016

Interstitial cystitis – do you know what that is?

Interstitial cystitis.  How many of you know what that is without google?  I am guessing only one or two if any at all.  I decided after making my monthly trip to the pharmacy yesterday I wanted to vent blog about Interstitial cystitis. 

If you want a full description and details this website has great information , or I will give you my version. I was diagnosed with it when I was about 29, I am 42 now.


IC is basically where the lining of the bladder is gone or quite sensitive. Which causes frequency and possible pain. For example,  if I eat or drink something with acid or caffeine in it….. I will soon be going to the bathroom (often) and pain could occur.  Some foods that I have found to affect it severely in me are tomato based foods, spicy foods, coffee, citrus anything, too much chocolate.  On that last one, can I get some sympathy here, I mean IT’S CHOCOLATE!  


Do I still eat and drink these things, yes I do, just in moderation.  For instance, I do not eat pizza one night, barbecue another, and drink a large soda on any given day.  The only soda I drink is Mug root beer, and that is rarely. I do drink decaf coffee, because I like coffee. I figure as long as I am near a bathroom, I am ok to indulge! 🙂

Other factors that could cause the symptoms  are lack of sleep and stress.  I can definitely vouch for these two.  So I try my best to get enough sleep and reduce my stress if I can.

Positives or Joys of IC are that I will not die from it, there is a medication I can take to aide in the symptoms, I can still have a pretty regular life.  There are many people with other disorders and disease out there that can’t say those things.

Sure I have to frequent bathrooms more often, I have to watch what I eat, and I have to pay a ridiculously high price for medication every month.  That was what this post was originally going to be about.  A vent for how much I pay for the ONLY medication with no generic in sight, but instead perhaps I should share how fortunate I am.

Here goes!


At this point in life I can pay for the medicaction, and I have aide from my health insurance with paying for a percentage of it, I can still work, I can still be active and run and jump and exercise with my daughter and granddaughter.  I can take road trips, I just have to find bathrooms (or a country road) often! 🙂 Keep this in mind if you ever plan to travel with me!

I feel a change occurred while writing this post. I had a change of heart or thinking so to speak.  I found JOY in something I seriously get tired of.  Funny how that works that way huh?

In fact, I’d like to invite you to check out Caleb’s page, he needs a kidney transplant.  I can’t imagine what his medication bill will be after his transplant or even right now!

I’d like to ask you to share a link in the comments below for a medical disease or a cause or individual that you know needs support.  That way we can spread the word about it/them, share in praying, and perhaps if you feel you want to, donate financially.

Thanks for stopping by!
Julie


* All words written are my own opinion as always!

3 thoughts on “Interstitial cystitis – do you know what that is?

  1. Ok, so I thought you were going to say something about how the clouds were lined up in the sunset picture you have at the top of your blog right now…(shaking my head, feeling pretty silly) Thank you so much for sharing this, and Caleb's story too! What a great idea!

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  2. Oh Julie!! I too can find some joy in all that we've been through this year. There is always someone out there going through something a little more troubling than us…helps to keep life in perspective doesn't it! Our next trip to St. Jude is the end of February & we pray we hear the words STABLE again….and we know there will be many little ones who probably won't hear those words. I'm thankful….thankful for all that St. Jude does for not only our little Katelyn but literally hundreds of other children battling pediatric cancer.

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  3. Heather, you never can tell what I will come up with to blog about! Im glad I could perhaps aide Caleb. Nikki, thank you so much for sharing! Your little girl is just a cutie & I am glad we could possibly aide St Jude. God bless you both! Thanks for commenting!

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