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
Monday, December 13, 2010
Friday, December 10, 2010
Thank Goodness It's Friday!!
I received this email and would love to share with you...
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 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
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
Tuesday, December 7, 2010
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
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
Saturday, December 4, 2010
Flare Go Away Already!!!
I have been dealing with this flare for 2 weeks now... Today is one of those days that it feels like it's at it's worst, which I hate because my spirits are down...
Does anyone ever experience contraction like pain when you have flares? I know I do... yesterday was one of those days... My oldest always jokes with me and says... "Mom what if one of these days you do pop out a baby, and you didn't know you were prego!!"
Is it sad that I have learned to hide my pain, so I can be a mom, wife and daughter.... I need to do installation but we all know how much I hate doing them (since I had bad experiences)...
I finally finished my antibiotic for my stomach (at least I'm eating more than once a day again, and not coughing up my lungs anymore) but I still feel pain in my stomach... I need to see the gastro doc this week.... and the general doc...
I can't wait until this is over...(Well all the testing and going to different doctors) I was told next is the neurologist then the Osteopathologist...
I'm trying something new... Nothing for the pain... and I don't think it's working out to well... I don't want to become addicted or depend on any kind of drug (what should I try?) ...
I did stop smoking... I've smoked cigarettes since I was 17 years old... And I feel great...NO Patches, No Gum...JUST THE GRACE OF GOD!!
Well I hope everyone has a great weekend....
"Great is the Lord and most worthy of Praise; his greatness no one can fathom" - Psalm 145:3
Lord, I choose to praise you through this pain. You are great, and there is no one worthy of Your honor and glory. "Heal me, O Lord, and I will be healed; save me and I will be saved, for you are the One I praise"(Jeremiah 17:14) I give you this discomfort, and I ask in the name and power of Jesus that You would take it away. Help me and heal me completely from my hurt. Let my heart ache only for the comfort and healing balm of Your presence.
--From the book... Power Prayers for Women By: Jackie M. Johnson
"Everyone goes through storms throughout life... But are you joyful through the storms? BE joyful at times when you think you can't!! And Glorify ONLY GOD!!" - Angelica Arellano
Hillsong United- Everlasting
http://youtu.be/YbGgA2lIDjc
Casting Crowns- Praise you in the storm
http://youtu.be/uHdcyue0bSw
Does anyone ever experience contraction like pain when you have flares? I know I do... yesterday was one of those days... My oldest always jokes with me and says... "Mom what if one of these days you do pop out a baby, and you didn't know you were prego!!"
Is it sad that I have learned to hide my pain, so I can be a mom, wife and daughter.... I need to do installation but we all know how much I hate doing them (since I had bad experiences)...
I finally finished my antibiotic for my stomach (at least I'm eating more than once a day again, and not coughing up my lungs anymore) but I still feel pain in my stomach... I need to see the gastro doc this week.... and the general doc...
I can't wait until this is over...(Well all the testing and going to different doctors) I was told next is the neurologist then the Osteopathologist...
I'm trying something new... Nothing for the pain... and I don't think it's working out to well... I don't want to become addicted or depend on any kind of drug (what should I try?) ...
I did stop smoking... I've smoked cigarettes since I was 17 years old... And I feel great...NO Patches, No Gum...JUST THE GRACE OF GOD!!
Well I hope everyone has a great weekend....
"Great is the Lord and most worthy of Praise; his greatness no one can fathom" - Psalm 145:3
Lord, I choose to praise you through this pain. You are great, and there is no one worthy of Your honor and glory. "Heal me, O Lord, and I will be healed; save me and I will be saved, for you are the One I praise"(Jeremiah 17:14) I give you this discomfort, and I ask in the name and power of Jesus that You would take it away. Help me and heal me completely from my hurt. Let my heart ache only for the comfort and healing balm of Your presence.
--From the book... Power Prayers for Women By: Jackie M. Johnson
"Everyone goes through storms throughout life... But are you joyful through the storms? BE joyful at times when you think you can't!! And Glorify ONLY GOD!!" - Angelica Arellano
Hillsong United- Everlasting
http://youtu.be/YbGgA2lIDjc
Casting Crowns- Praise you in the storm
http://youtu.be/uHdcyue0bSw
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