Monday, January 14, 2013

Painful Bladder Disorder




I know some of you are asking, "What in the World is this" because you're used to finding a little poem or prose on my blog..And some may not even be interested in this but I had to write it..I have been burdened so much to write this for so long, knowing and praying that it might help someone out there that deals with this everyday.. First I want to say, I'm not looking for pity or grumbling and complaining about every little ache and pain that we all go through at one time or another. I'm not that type of person. This is something I have found hard to talk about but I've got better over the years because I'm a very private person that trys to keep my personal life to myself. I know there's lots of you that have many ailments going on and I'm not the only one in the world with problems such as this.. I have sympathy on anyone and everybody because we never know unless we've walked a mile in their shoes..But I've tried to make myself an advocate for a Disease that very few people have any knowledge of.. It's called, Interstitial Cystitis.. I.C. for short..It use to be a little known disease without a cure but due to a Foundation called , The Interstitial Cystitis Association which is a group of doctors and patients that came together to find a cure.. They've also took their expertise to Washington, D.C. and have got lots of results.. I.C. is now on the list for Social Security Disabilities.. (I'm not on Disability). The disease is known as painful bladder  syndrome and affects more than one million Americans of all ages, gender, race and ethnicities. For people living with I.C. pelvic pain, pressure, or discomfort related to the bladder is typically associated with a persistent urge to void or urinary frequency , in the absence of infection or other pathology.. And may God help us all if a bladder infection or UTI occurs.. It stirs it up worse... So with this info I want to tell my story in hopes that it will help someone since I've had it for 20 years..

In 1992 I was diagnosed with it by my Uroligist.. I was having a lot of Bladder and UTI infections to start with and he would put me on antibiotics.. It got so bad the antibiotics wasn't helping and I was in constant agony.. He decided to put me in the OR and look at my bladder on the inside and there were all the markers.. I had what they call Hunters Ulcers in the lining of my bladder and the I.C  which is inflammation ,was buried beneath the lining of my bladder.. He gave me the diagnosis and told me there was no cure.. At that time they were using prescribed antihistimines and I tried those and all they did was make me sleep all day to no avail.. Over the years it waxed and waned.. It would go to sleep like a sleeping bug and wake up when I was the least expecting it.. He had also told me to watch my diet really close and stress.. they both played a big part in it.. Needless to say, I didn't know what to eat but I have surely come to find out.. Over the years I've had several Bladder distentions where they go inside the bladder and stretch it causing it to scatter but it never did last for long.. Then in the late 90's they started using these treatments on me called , DMSO. They put a catheter in your bladder right there in the office and take a syringe and put the medication into your bladder.. They burned me up for a little while as I had to hold it in my bladder for at least two hours, without that time ... Afterwards I smelled like Garlic for a day or so since it had Garlic in it.. This went on for 4 years straight. I went every week or two and that's as long as it'd last.. Me and my doctor were at our wits end.. By that time it had spread into my urinary tract and then God sent a MIRACLE,. I was feeling so alone and no one really knew how I felt, not even my family and was ready to throw in the towel when an idea occured to me.. I broke down and wrote a letter about it to my local newspaper, although I was still embaresed . They have a section where they post Letters To The Editor and must have felt like mine was news worthy. I signed my name to the letter and told them they could give out my phone number to anyone that called for it..A few people called and told me they had it too and said they were taking the antihistimens.. One man called and said he'd had it for 20 years and had to be put to sleep for the DMSO treatments. ( It is worse with men as it gets in their prostate). I ask him if he knew of any support groups out there and he told me about the I.C. Foundation.. I called and joined the group and they've sent so much info over the years and they are constantly looking for a cure.. Then one day this lady called and told me about this capsule she was taking called, Freeze Dried Aloe Vera and the only company that sold it was located in Colorado and they made it especially for I.C. patients... The name of the Co.. is Desert Harvest  I orderd a bottle and tried it. After a few days I noticed a significant difference and I've been on it ever since thanks to this sweet, dear lady.. She has become my best friend and we've shared so much over the years.. We lean on each other for support.. She read my letter and called the paper and they gave her my number..That's the Miracle that God sent.. Until recently, outside of a few little flare ups and nothing that adding one or two more Aloe Vera capsules didn't fix.. I've done wonderful.. My doctor was so amazed and took the info down to give to his other patients... He said I was the worse case he'd ever had.. A while back when I was grumbling so about taking antibiotics when I had to have teeth worked on, that's the reason.. I was terrified of what they would do to my bladder and Urinary tract.. They didn't bother me at all, go figure.. Last week I came down with bronchitis and Larangitis and had to have them again.. I had already been taking Mucinex, which is what the doctors are reccomending to break up mucus. I  was already burning some by that time and now I'm in agony with the worse flare up in many years since I started the Aloe Vera.. I've learned to tough it out because there's so many out there with far worse and this too, shall end.I take comfort in knowing there's a higher power than me that knows all things and will take care of us if we turn it over to him.. He has really been there for me and for that I will always be eternally grateful. I think of my mother and what she went through with bladder cancer before she died.. I'm sure now she had I.C. as well, for many years and never got diagnosed .. It is hereditery, It breaks my heart because my little 12 year old grandaughter has it now.. I feel so sorry for her when she gets a flare up that I cry.. I've tried to tell her about her diet and what to eat and drink and like all kids it goes in one ear and out the other.. It takes a lot of educating one's self to get by.Experience has taught me that.. I might add that Fibromyalgia and Irratibile Bowel Syndrome go along with this disease.. I have the Irratible Bowel but thank God no Fibro yet..Sorry for the long windy post but if there's one person out there suffering alone, I want you to know you're not alone.. Feel free to message me anytime.. May God Bless Each One , Susie

15 comments:

  1. Oh, my, Susie. I didn't know about this illness. It sounds very painful. I'm sorry you have this and hope you will be healed of it. I appreciate your informing us about this condition. I sure hope medical science will find a cure for this soon. Take care of yourself. I enjoyed talking with your yesterday on the telephone. I sure hope you get to feeling better soon. Blessings, Brenda.

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    1. Thank you Brenda... I don't talk about it much.. there's so many out there with it that I just felt like telling my story might help them to not feel so isolated and alone..I enjoyed talking to you as well.

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  2. Thank you for explaining this Susie. I am so sorry you are burdened this and I hope you post will give someone comfort and help them. Blessings to you and take care of yourself.

    Hugs,
    Beth

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    1. Thank you Beth.. I hope and pray it does..Blessings to you.

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  3. Oh dear Susie, I'm so sorry you're in such pain. I'll be praying for God's comfort and healing for you, and the grandbaby. You're so brave -- never hinting at being in pain in your poems.

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    1. Thank you so much Charlotte.. Prayers are what gets us through.

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  4. Susie, I'm so sorry to hear that you suffer with this. I hope the flare-up ends very soon and you get to feeling better quickly.

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  5. Thanks Susie for sharing this... I think, by telling your story, that you can definitely help others. There are so many undiagnosed diseases out there ---where the best way people can help each other is through communication. Glad you have found something which works for you. I cannot imagine the pain you have been through for so many years. God Bless You.

    Prayers and HUGS,
    Betsy

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    1. Thanks Betsy, I hope it does too.God Bless you

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  6. Great and interesting post. I like it.
    I also invite you to my blog. ;)
    Yours. Have a nice day.
     
    You can also find me on the fanpage and keep track of my work:
    https://www.facebook.com/pages/In-another-light/413836138693856?ref=stream

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  7. Thank you and I would be honored...

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  8. Hi Susie, thank you so much for your informative post today. Someone in my family is going through these kinds of symptoms. I have been so worried about her. It just started several weeks ago and the doctors haven't given her a clear cut diagnosis yet, but it sounds very much like what you have gone through. I am going to send her a link to your post and have her take a look. It would be wonderful if this could set her in the right direction for her treatment. I'm so sorry that you have had to endure this for so long my friend. I hope the flare-up will get better soon and the pain will lessen it's grip. You are a very kind and unselfish person to think of helping others when you feel so bad yourself and it inspires us all to try and be more long suffering and patient. With Love, Delisa

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  9. Gosh Susie, I am so sorry to hear about all this. I will keep healing thoughts for you.

    I appreciate your willingness to share this with everyone, I am sure your bravery will help many others.

    Peace to you!

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  10. Thanks Susie for sharing. I know it wasn't easy. I am sorry you have to go through so much pain. I have Fibromyalgia and the flare ups can really get bad. It helps I don't have to deal with long cold winters any more. Take care of yourself. It is always a bright light when I stop by your page that brings me peace.

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