The AfterMath

The "AfterMath" has been a very humbling experience if I may say... I would have never thought in a million years that I would have to do something I didn't want to do..just for comfort or health reasons. I say comfort because to be comfortable every month and NOT being bed bound for a week every month... The choice to be some what "normal" but not guaranteeing the pain will be any better... The surgery had it's pros and cons... and for the first couple days ALL I seen were the cons!! First off I was not aware I was spending a night in the labor and delivery floor.. and once I found that out in recovery, I was a wreck for the next two days!! Yes I know in my last blog I stated that I'm blessed with two beautiful girls, but in my mind and heart I've always wanted one more(just a chance to have a boy) and with all the sudden health issues there was no way... I would never want this experience to make me a bitter person, because I would hate to be that!! The way I look at it is it's just one more thing Interstitial Cystitis took from me, and it's kinda of an attitude you have with someone that you both agree to disagree and "move on"...

But after all the different emotions, the ups and downs... "The Aftermath"... How I've grown to realize how beautiful my "little" family is... I think we tend to "go through the motions" in life and we tend to become blind of just the little gestures of kindness.. I know I do, and I Always stop and look at how things are in life and how beautiful they are (but we all tend to go through the motions)... God has shown his Mercy and Grace, and I believe this because if NOT I would have become that bitter person if I didn't have him to lean on...  Or maybe I should say I used to be that bitter person, and now I have him and my life and heart have changed dramatically!! And by having him is not saying I'm perfect and I have all the answers... It's say the opposite! It's admitting that I will have ups and downs, but that I will have faith in him that he will give me the comfort and strength to over come them... Just like my "AfterMath" emotions... I can not express with words the feelings I have felt the last few days, it has been amazing! I believe this is just one step in "the wilderness", one step closer to the "mountain top"!! God is AMAZING!!

I love this song.. One Republic.. I'm sure some of you didn't know their a Christian band
http://youtu.be/HtNS1afUOnE

Changes... Can be difficult... But will you go through change lying down or standing up?

Yes this is very true... Changes are difficult for the most of us... especially if it's something we didn't plan for our future... I am one to "go with the flow", but recently I was told by my doctor that there is more going on with my body then just Interstitial Cystitis... and for this reason we need to try different things to see if it helps with my pain levels and symptoms...

One suggestion is to take Lupron shots to stop my monthly and see what happens from there... Or I was given the option of a Hysterectomy..3rd option is Lupron and a Hysterectomy...

When I first heard the news, it was shocking to me. After my youngest daughter was born we always hoped for a little boy.. but now with the news I've come to terms with this never happening... At first I was surly heart broken about it, but how can I be so selfish and have hurt or harsh feelings...  I have been blessed with two lovely daughters who I love dearly and wouldn't change a thing... Although I can admit this is a difficult change... a "change of plans" per say... The Lord knows what's best for me and I will not question this... I pray he will give me strength, courage and wisdom for what's coming next...

1st shot of Lupron is tomorrow so please pray for me my fellow IC family...

"Happy are those who are strong in the Lord"-Psalm 84:5
"Protect me, for I am devoted to you. Save me, for I serve you and trust you. You are my God" -Psalm 86:2
"You are my refuge and my shield; your word is my only source of hope"-Psalm 119:114

It's almost the FOURTH of JULY!!

Hello my fellow IC family... I hope everyone is having a pain free day... I'm looking forward to the long weekend!! I'm ready for some family fun times! It has been a long month of worry and stress for my family and I.
 We recently found out my mom has ovarian cancer which spread to her diaphragm and her fatty tissue that covers her intestines... She went through surgery on 06/24/11, they took most of it out and the out come looks great... Now she has a long road of chemotherapy( 4 months ).  I know God will be by her side every step of the way... She was sent home today and I'm excited to see her without tubes coming out from every where!
 We all tend to take life for granted or we just simply go through the motions everyday... I know I have... and when your family is hit with a scare like CANCER, it makes you stop and appreciate everything and EVERYONE in your life!!

 I hope everyone has a wonderful fourth and be careful!

It's been awhile... But here it goes...

Hello my IC family... I hope everyone is doing good and having a pain free week.  It's been a long time since I blogged, I guess my life was in a dark place and I needed time to myself.  I think if I have one flare after another with no relief, life gets harder to deal with...  I always feel I'm at the end of my rope and I tend to isolate myself... I'm sure a lot of you can relate!

In February I went through a hydrodistension and a bladder biopsy... the procedure went well... but the first week after my procedure I was having a really bad flare so I'm yet to see if the procedure worked...

Today I went to the Ob doctor since I have new symptoms, which I was told I might have endometriosis... which I don't know what to think about that... My mind frame lately has been so fed up with going to the doctors or even to the uro... I know that's no way to think, but it just takes a tow on me (mentally).... My ob said she wishes she can be straight forward and give me a straight answer with what's wrong with me... but now I have to go through more test to see what else is causing my new symptoms... But I'm not going to look at it in a negative way, I'm looking at it like ... it's the first steps of finding out what is going on... (I'm not going to do the "what if " game) I hate when I do... because then I feel defeated and lost... and I will NOT allow myself to be in that dark place!

I'm praying that God gives me a peaceful spirit, and strength to deal with the daily pain that comes with this disease...

Here's a video of Francesca
http://youtu.be/pqqdA8LHN7I

Emotional Monday...

What a way to start off the week.. Emotional and down in the dumps!!.... My journey with one specialist is not quite finished... I went in to see the Gastro doc last Thursday only to find out I didn't take my antibiotic right for it to be 90% effective... (If that makes any sense?!?) I was supposed to take it with Prilosec to make it more effective... so now I wait for another 8 weeks to see if my symptoms come back...

 I guess at this point I'm just frustrated... Just frustrated with everything... It's sad that we have to be our own doctor.. At this point I just want to take in a list of all the diseases that accompany IC to my general doctor and tell him... "Here's a list of things to check for!!" I think I have fibro or arthritis, because I'm always so tired and my body hurts all over!! When will it end?!?

 I'm having one of those days where I just cry all day... I need encouragement... I hate when I get like this.. Today is one of those days I prefer my kids not to see me... Because today is a day I can't hide the pain...  This is when I cry out to the LORD for comfort and peace!! Sorry to vent... but we all know how bad a flare can get... and this bladder/yeast infection doesn't help..

"The LORD himself watches over you! The LORD stands beside you as your protective shade."            --Psalm 121:4

"For the angel of the LORD guards all who fear him, and rescues them." --Psalm 34:7

"Even though I feel like I'm at the "End Of my Rope" I set my eyes on the King of ALL KIngs for comfort!"--Angelica Arellano


You're not Shaken-- Phil Stacey
http://youtu.be/V_UWEtraIM

What Faith can do--Kutless
http://youtu.be/WTNBWv33-QI

Thank Goodness It's Friday!!

I received this email and would love to share with you...

Senator Harry Reid on Interstitial Cystitis

Senator Harry Reid educated colleagues about interstitial cystitis (IC) Tuesday during a discussion about the 20th Anniversary of the NIH Office of Research on Women’s Health (ORWH). Speaking in support of a resolution proposed by Senator Barbara Mikulski to recognize the tremendous role that ORWH plays in advancing scientific research on women’s health, Mr. Reid highlighted IC as an example of a condition that primary affects women.

Senator Reid explained to the US Senate that IC “…can best be described as the pain is like shoving slivers of glass up and down someone's bladder. The pain is excruciating and awful. It was a disease that people said was psychosomatic because it was only women who had the problem, so they overlooked it. If it had been men—and we were an all-male legislature at the time—I am sure it would have gotten more attention. I added my assistance to Senator Mikulski, and we were able to establish a protocol. Now people understand this, and it has made a lot of progress. This is one example of why the work of Senator Barbara Mikulski has been so important.”

Barbara Mikulski also shared a story from the 1990s when a group of female senators recognized the vital need to change the then NIH policy not to include women in clinical research trials. Senator Mikulski said, “We had a big problem. Women were being systematically excluded from NIH clinical research. It was not sound science, and it was not acceptable. Our worst concerns were confirmed by a 1990 GAO report, which proved that women were not being included in clinical trials.

I had to do something about it. I remember it well: I called up my women colleagues, and they agreed. We piled into the car on a hot August day, and we drove to NIH in Bethesda, MD. Our aim was to assemble all 12 institutes, communicate our concerns, and see what goals they could come up with to resolve this unfair exclusion. We showed up: Connie Morella, Olympia Snowe, Pat Schroeder, and I—and so did the TV cameras and Time Magazine. We made it clear that the time had come to include women in scientific research, remember their place in the Federal budget, and treat them with respect.”

Thanks to Senators Reid and Mikulski for helping to get the word out about the need for expanded interstitial cystitis and women’s health scientific and clinical research!

This is from the ICA e-Newsletter...

If you haven't already signed up for the e-newsletter...YOu should... it's free!!

www.ichelp.org 

I hope everyone has a wonderful weekend and remember STAY POSITIVE!

"Don't be afraid, for I am with you. Do no be dismayed, for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand. --Isaiah 41:10

I know I'm going through a rough flare right now and I'm standing on the word of God to give me peace and comfort! --Angelica Arellano 

Let's give Thanks!!

I want to talk about the premier of MTV'S "True Life"-I can't have sex...
 I think we were all disappointed because we were expecting to turn our televisions on and see another IC patient going through what we all go through on a daily basis... This was just a tip of the iceberg, (IC girls we of all people) We should know... that with IC we deal with more than one disease... There's Fibromyalgia, Painful Pelvic disorder, irritable bowel syndrome  and the list goes on... But the show was about having painful sex or not being able to have sex... Tali was given this opportunity to share her story along with 2 others... I think she tried her best!!  But like I said... It was just the tip of the iceberg... Many of us may deal with this and maybe some of us don't... I know I'm new to this IC business..( I'm a baby to all this.. some of us have been dealing with it for over 10 years!!) And watching the show made me realize that maybe I have Painful Pelvic disorder or vulvodynia...  I know it's more than IC...
 My point is we shouldn't have all this negative or harsh feelings towards Tali or Mtv... We should applaud Tali for stepping up and trying!! And Mtv was focused on the three women who can't have sex and what can they do to fix it... Remember they only have an hour...
  With us IC patients we don't need an HOUR of air time...WE NEED a reality show that's on every week to get our point across!!

 I know we all were disappointed in some way about the show... But let's be an Advocate for IC and always share with friends and family... Whether it's through Facebook, a Blog or just a simple conversation!! I hope you have an amazing week.... and stay positive!! Don't let this disease run your life... And BE STRONG!!

Give your burdens to the LORD, and he will take care of you. He will not permit the godly to slip and fall. - Psalm 55:22

Commit everything you do to the LORD. Trust him, and he will help you. -Psalm 37:5

"Hold onto Faith... Faith that there will be a cure!!" - Angelica Arellano

Francesca Battistelli- Free to be me...( 1 of my FAVORITE)
http://youtu.be/mgc5WJd3t1k

Jeremy Camp- There will be a day
http://youtu.be/k8gkDiTvloc