Forums:
So I just excitedly got my absolute favorite musician John Mayer's new CD and one of his songs, War of My Life, could have been written as an anthem for all of us! It is incredibly beautiful and I had to share. (In my completely biased opinion, John Mayer is a true poet and musical genius.)
Here are the lyrics:
Come out Angels, Come out Ghosts, Come out Darkness, Bring everyone you know
I'm not running and I'm not scared, I am waiting and well prepared
I'm in the war of my life, At the door of my life, Out of Time and there's nowhere to run
I've got a hammer, And a heart of glass, I got to know right now, Which walls to smash
I got a pocket, Got no pills, If fear hasn't killed me yet, Then nothing will
All the suffering, And all the pain, Never left a name
I'm in the war of my life, At the door of my life, Out of Time and there's nowhere to run
I'm in the war of my life, At the core of my life, Got no choice but to fight 'til it's done
No more suffering, No more pain, Never again
I'm in the war of my life, At the door of my life, Out of time and there's nowhere to run
So fight on, Fight on everyone, Fight on, Got no choice but to fight 'til it's done
I won't give up, I won't run, I won't stop for anyone
(listen to it at: http://www.youtube.com/watch?v=oam5IJOLqYI)
Basically every line connected with my/our IC & treatment experience. But I wanted to share a few parts that really stood out to me, and I'm interested to hear others' takes on it.
Got a pocket but no pills > Hah! - No more Vicodins or easy ways out, we're taking the hard road.
All the suffering and pain never left a name > For me this brought up how I struggled for years with no diagnosis, that my pain literally didn't have a name then. And even when it did, no one knows the name.
Got no choice but to fight 'til it's done > Many of us have found that Matia is our best choice, or only option left, so we have to fight this through.
I won't give up > This speaks to so many different levels -- not giving up on ourself, on hope, on going thru this treatment, on the commitment to the diet, etc.
Thanks for letting me share. 
great post
Lisa vey good post. I sure do relate to the words as well. I was reading this just as I am in a battle re: my benefits to get paid due to missing work. I was just emailing my Union when I read your post. I was denied long term disability benefits earlier this year and ordered to get back to work full time( I was managing part time hours) or loose my job. Basically the 3 Doctors on the panel for said if I had a less stressful job all would be fine. Basicaly they were stating I don't have I.C and it is all in my had. So I was back for a few months and then recently off for partial hysterectomy. Back to work full time this week. I obviously still have I.C. in fact symptoms kicked up after thr surgery. It took until this week(10 weeks) for the insurrance company to decide if the reason I was off this time is related to the prior absence. They funny enough have said it related to the prior condition which they did not believe I had in the first place. I am not wanting to be paid by the insurrance company as it would be better to be paid by my employer becasue I would get more money and also the couple of months I already put in won't count towards my other benefits. I start at square 1 again. It takes being back 6 months to be back to being a normal employee again. For the six months if I am off for any reason at all for day or more I have to go to a Doctor pay for letters and wait for the insurrance company to decide if I was off was related to prior health condition. Once I am in for six months I am not required to provide notes if it is less than one week. Sorry for the long remable but I am quite frustrated by this whole process besides having I.C. Not sure if I should just suck it up and accept this or fight. I do feel like fighting just to educate people in general for others who come behind me with this condition and conditions like it that are difficult for Doctors to understand. I would be interested to hear what others think I know what I wrote might not all make sense as these benefits are difficult for me to understand as well. The Union is offering a course in December re our short and long term benefits and how to speak with the employer. I am tempted to take the course to understand it for my self but also to help others going through the process in the future as it has been a lonely road for me. I know that I could have used an advocate when I went through this process and especially when I had to go by myself in a room with three Doctor's to try and prove my case. They had the power to trup my Doctors diagnosis.
Anyway I may go and look for the cd as I too like John Mayer and did not know that he had a new CD.
the insurance nightmare
Kriste,
My heart soooo goes out to you. Years back I had to go on disability for IC and insurance denied me, plus wouldn't even cover my conventional medicine treatment. It is so frustrating and saddening you want to scream!! When you're already dealing w/ this illness and rigorous treatment, that is more than enough. The insurance battle on top of things feels just too much... esp as you essentially have to prove something that is so real and obvious to you yet is invisible, "improvable" and goes against the ingrained paradigm of doctors. It calls into question your honesty, integrity, etc., which adds more unnecessary pain to the mix. You wish you could get them to understand you'd gladly take doing your job (heck, even overtime) over having this disease, that you're not trying to get out of anything. So sad that for illnesses like IC, even if people technically could work somewhat, the medical system does not give them some time to just rest and heal.
As far as deciding whether to fight, certainly as you say much good could come out of it, even if it didn't personally work out for you. But you must honor yourself first and determine whether you have it in you to fight, and no shame in it if you don't, b/c if you don't take care of yourself you jeopardize the very thing you're giving everything to heal. But if you think you can, and there are any remaining possibilities, like further appeals or such, I have had many surprises in life when I fought things all the way to the end, and sometimes got appeased b/c they finally wanted me to shut up or go away, hah.
I'm so sorry Kriste I know no
I'm so sorry Kriste I know no matter where you live this is a difficult thing to have to go through. Sending love and healing thoughts your way I will be praying for you.
Kriste/IC Hope
I just LOVE it when life/universe affirms reflects encourages us with synchronistic messages- at least I choose to see them that way! It's just great encouragement that all is working out and all is as it should be. The last couple of years has been so challenging but we are all moving forwards and will reach our goal. Kriste- so so sorry that you have to deal with the monolithic bone ignorant doctors that want to block your benefits. the bottom line is $$$$ and saving it and if its something that is"non-life threatening?" I guess its dispensible. The horror stories out there of insurance companies taking advantage of people is too numerous to count. It's not about health. Which to me is a basic right. Like air or food or water. I wonder how those doctors sleep at night. If it bothers them what they do? Or do you just get numb to it after awhile? I just walked pat my office kitchen after finishing up a ricecake only to notice that there are donuts and coffee drinks on the table courtesy of ...you guessed it -our lovely insurance reps. The irony is killing me. thinking of you and I am praying for your success in getting your benefits. to all of you- never give up- we are making the "impossible" possible. It's not just about our individual struggle ( which is important no doubt) but by doing this - going through this we are making history in a very devastating disease. Each person that got better only solidified my hope and determination. This is for each woman man child out there dealing with this and the humiliation of being discredited and dismissed. Thank you all for everything and keep up the great work. much love and respect- Mary
xxoo
i am very sorry kriste for what u went thru...its is awful that u were treated that way...and sad to say it happens all too often...insurance co sux!!!
and as for the song...absoutely perfect...the words totally describe what we r gng thru...
i wont give up, i wont run,i wont stop for anyone....priceless...xxoo
So true
I love John Mayer! Wow, what a great song for our lives. I wish I could say IC is the worst thing I have been through, but its not. That song is so true for me is so many things that have happened to me in my 29 years of breath. I love music because it speaks to the soul. It allows me to express feelings, that may have been kept hidden if it were not for the song to bring them out. Thank you for posting this, I cant wait to listen to the song! I am going to go see if I can find it on U-tube.
Disability
I have heard that disability for IC is hard to get, but it isn't impossible as I know of a few people who get it. Have you contacted the ICA? They have a disability packet they can mail you, and I think they have people to help you through it. I've heard that you get denied several times at first. Keep trying.