THANK YOU GOD FOR YOU ALL BEING HERE!!!

Thank-you god for you all being here.....I was diagnosed 4 years ago, and have endured a lot of misery since then.  As I have read from so many of you, I too have had to deal with what seems like millions of kidney infections and stones.  Through out all of this, I too have been told that we have to deal with each event as they come up.. I live in chronic pain. I take 8 vicodin and 6 neurontin a day just to stay semi-functional.  Obviously the vicodin is for pain, and the neurontin is for neuropathy in the kidneys.  My doctor says that with all of the stones I have passed that the inside of my kidneys behave like and amputee patient.  They think some of my pain is "phantom" pain.  Just like the amputee still feels pain in the limb that was removed. My kidneys are thinking that I am passing a stone even when I am not.  

I can relate to the the horror stories of those that go into the ER and are looked down on.  I worked in health care and have thought the same of people....until it was me.  I have an episode of "renal colic" at least once a month that I have had to go in the ER and get treated for.  Some nurses and doctors look at you like you are a drug seeking person.  No, that is so wrong...I am just a person in need of their help and I feel like a joke to them.  We live in a small town and when you go to the ER you have the same nurses and doctors almost everytime.  They do look at you like you are a freak of nature.  When you tell them that the pain meds aren't working and you need to have a bump.....they look at you like you are an attention needer...NO...I just don't want to hurt.  Then they will tell you that you are having an anxiety moment..that is why your bloodpressure is high.  When in fact you just hurt and they don't have your pain managed.  It is so sad.  Your self-worth is in the crapper.  Like they just give up on you because they don't know how to fix it. Thank-you all for sharing your stories...It is so nice to know there are people like me in the world.

I have a family also.  A very deticated husband and a nine-year-old that is trying to understand everything.  Mommy was the biggest tomboy until this.  I would 4-wheel, fish, snowboard and just try to do it all with my family.  When I got sick so much of that went by the way-side.  I think I spent almost a whole year on the couch....Every bone in my body hurt.  They put me on the fentanyl durgesic patch to help with the pain.  But, all that did was make me feel stoned all the time.  I wasnt me at all.  I was depressed and upset with myself all at the same time.  When Mayo told me I was extremely depressed when I was in the hospital 2 weeks after my wedding, and that my pain meds may have something to do with it...I got P*ssed and weaned myself off all of my meds and made my doctor start over with it all.  Its not that I was depressed because I try to have a smile on my face all the time...even when it hurts.  What I was upset about at mayo was that there was nobody that understands this and is willing to do what it takes to fix it.  That was what upsets me the most.

I love my life...I would love it a lot more if I wasn't in the hospital 2-3 times every year. I would love it even more if I could not get let go from a job just because I am sick.  I know there is FMLA, but you have to be someplace for a year to qualify for that...and by god, once you do get it...don't exceed your aloted time by 1 hour....they will force you to resign for that too...trust me....Has anyone had any luck getting disability for this?

Again, thank you for you all being here.  When I found the page today the first thing I did was take a deep breath and cry.  I cried. I cried so hard it was like I have never cried before.  Then I read some of your posts to my husband.  It felt so good to show him that I am not a freak. (He has never called me one, but you know what I mean.) And I cried again.  There are so many things I know I forgot to write about, but you all have the idea.  Thanks so much...i just cant say that enough....

Thank you all for being here.

[MSKshelly]

Your post brought tears to my eyes and also deep sorrow to my heart! Daily I amazed to see this site growing, which is great that is what we are here for but it is also echo's the tremendous need we have to get the word out there..., to find answers, treatments and most of all a few doctors who will stand up with us!  How many of us are there that haven't found us yet..., how many have no internet or are children, or elderly which makes it all 10X harder.  WE HAVE GOT TO PULL TOGETHER TO UNITE IN RESEARCH, INFO, AND SPREADING THE WORD!

  There reason for your pain is a very interesting theory to pursue....,however I do hope you will read through not only the post but the health pages on this site as well. Top right hand corner.    I am also going to repost a newbie post I made some time ago...
that I think might help etc. and even though this maybe in the health pages, with all our newcomers it might be a blessing to post it here again!


HI and Welcome!!  I am so glad you came over here there is so much good information on this site for us.  Really we work together to network information to help one another.  Doctors, I should rephrase that most doctors do not understand why we have chronic pain even when no stones show in the ureter and no infection shows up with on UA. In the beginning I began to research for answers for my own chronic pain that my doc and I did not understand.  Honestly at first we butted heads, him telling me my kidney DID NOT HURT!, Me telling him, my kidney that is not supposed to hurt is sending me nasty messages..., LOL.  Now I think he is the greatest and he is one of my advocates!

The thing that surprised us for me was the chronic pain went away when he put me on long term antibiotics.  At first he did so because we thought I had chronic cystitis, but my bladder did not respond to them only my kidney.  I have since also been diagnosed with Interstitial cystitis.  It was then a stumbled into learning about biofilm infections and a long amazing story how we began to prove what was happening to me, but for me the pain is cause by a biofilm infection that has set up with all those calcifications in my kidneys.  Now I am an EXTREME, 13+ years ago half way through a stones surgery they realized the operating room had not been cleaned and I was scoped with unsterile instruments.  I got very sick and because of fear we did not know all the details and my infection was not treated properly!  What resulted was that these hospital resistant bacteria built a fortress in my kidneys for many years before I got help!!  BUT this has helped us understand more about this pain in others!!  I even had a high level researcher get involved and write a 3 page report giving credibility to my theory!  I currently have a 13 page report I have been working on for the last 2 years really to finish full of articles to back our pain and to help with treatment options!!  

I have no idea of the number of patients I have talked to just like yourself!!  The first step I would encourage you to take is to go to the Health pages tab on the to[p right corner of this forum, make sure you are signed in.  We have many great resources and article in that section,  Many have contributed to this section making it an awesome resource that should keep you busy for a while.

Then there is also a paper I wrote in 07" for a patients to take to their doctor, that is under the MSK menu item on our website set up
mainly to network IC patients in MO and Ark but I also put my MSK research there along with a link back to this group.  That site is MOARK IC.

Just to give you an overview and not overwhelm you with too much info initially these are steps we have found helpful toward dealing with the pain issues.  Starting with the least invasive first and ending ONLY when all else fails with surgical options.

1.  Like your doctor said, drink lots of water never let your kidney get
empty or dry.

2.  Limit your meat intake, since this is tough on the kidneys many have found cutting this to about 6oz a day helps.

3.  HAVE YOUR VITAMIN D LEVELS CHECKED then try to get it up to about 50!!  All have come back very low except one!  I was shocked at how low my levels were and how much better I feel, am better able to fight off the infection and I have less pain.  It is important to work with your doctor though because too high levels can increase stones too!

4.  Avoid getting overheated or overexerted

5.  Try taking some natural antibiotics.  There is a list of them in 'the health pages.  

    One I have found, Silverbiotics made by Biotech Labs, to be very helpful!  The cheapest place if your in the US to order it is through Vitapal, there is a link on the MOARK WEBSITE to them also.  If you would like some research on this also you can pm me.  However there are other natural antibiotics as well.

6.   If you continue to have pain ask your doctor about trying a long term antibiotics.  This alone helps many!  I have had to live on 2 full strength antibiotics for over 2 years... REMEMBER I AM THE EXTREME, however last year I was on IV's basically peeing blood.  this year with help, I am able to use the orals natural and prescription.

7.  There is a procedure written about by Dr. Stuart Wolf, though more then we realized actually do this procedure.  He however did a research study on MSK patients with the unexplained pain and using this procedure. He had very good results with it.  I had this done last year and that along with a hard dose of the IV's and raising my D levels has given me some of my life back.  I have gone from being double over on the couch to be able to be a part of my kids life!

    Again, I do not recommend surgery ever as a first step.  We know that the more you mess with the kidneys the more problems you can have BUT, when you to the point the pain meds do not even touch the pain or like I was peeing blood daily, living on IV's and had no quality of life it was time to do something.  If none of the other things work, then this procedure is worth discussing with your doctor and considering.

  If you need, I would be glad to send you some pdf articles for your doctor as well.

Hang in there! (hugs)  I am so glad I saw your post and you joined us!

Keep in touch and let me know how you are doing!!

Shelly

[jaimers_wi]

Thank-you so much for making me feel so welcome here....I feel like it is finally someplace I belong.  Someplace where everyone here understands....My husband and my son do their best...my parents kinda live in this world of denial.  Like this cant be going on....so my mom will call down modern medicine and say that they are just out for money.  Or she will say that everyone has a diagnosis and she has no idea why I am always in the dr.  She calls down the pain meds I have to take...It becomes very hard and sad when the people you love the most are in denial.  Its like my mom has read Dyinetics (that book for L. Ron Hubbard) and now thinks modern medicine is a joke.  Whats really funny is when she gets sick and is really miserable, she goes to the dr for an abx to relieve her illness.  But when I take my meds, its all wrong... I love my mom, but it makes it hard.  It is a 3 hour dirive to go see them and it is a very painful drive to say the least....and then when I get there she calls down the meds I have to take to relieve the pain that was do to the trip.  So, I dont go see them very often for that reason.  I love them dearly and sent them the link to the group, but when your in denial it will never get used the way it would help them the most.

Again, thank you for being here.....this new family of nime.  It is so nice to be somewhere  I belong...THANK YOU ALL....I SEND YOU MY LOVE AND SUPPORT!!!!  ALL OF YOU!

[MSKshelly]

One of the big things I do see in not only my own life but that of those around me is denial or even anger at the deterioration of my health.  I can not nor would I hear go into the emotional pressure I am under myself right now, but i see this so much in the lives of patients.  I will also admit, sadly I grew up with a step grandpa that was a doctor.  My husband was/is very anti medicine.  From having some problems that were caused by medical professionals etc and him I learned to think for myself and began to study natural medicine on my own, we had two babies at home as well. I also got to the place I was very judgmental at times for those who took pain meds or used a lot of natural medicine... I suffered for many years a lone thinking I could handle it, but instead I let my health pain etc, get so bad it has been very hard to get under control etc.  

It took a lot for me to swallow my pride and go on pain management.  Sadly this is what it takes to be a wife and mother yet this is often thrown in my face in hurtful and
destructive ways!  Through all of this I have learned to be more compassionate though to others.  I am sorry your family is not supportive and I KNOW HOW MUCH IT HURTS.  There is a great article in our health pages called Partners in Pain written by a husband of an MSK patient that past away last year!  We don't really and can't understand what those around us go through as well....So that is why this support group is so important to all of us!  It is only together we can make a difference and together that we can empower the lives of each of us to have the courage to believe in ourselves,  cry and whine when we need too without judgment and then go forward hand in hand to work for change, research and help!

HUGS
Shelly
PS you might tell your mom about this network >>. maybe reading the lives of others that are hurting would open her eyes. ( I do often wish I could give a few people around me just 1 kidney stone, so they would understand!)