I can't stop crying. I feel like it's my fault!

[Kara29]

I've been laying here since 2 AM crying up a storm and sogging up my pillows and blankets. I just have this very strong feeling in my heart that the Ablation failed and I should not have asked to even speak about it here. I feel like it's my fault that I failed yet another treatment. (Hold) Can't see the keyboard.......Ok. Those of you that know me and know me well, know that I have tried the world to treat this disease or at least to get some relief from it and you also know that I've tried everything out there excpet for CyA. I am not willing to go there because I still want my own babies some day in life. I really wanted this too work but feel so stupid that it didn't and I had such high hopes for it. My pain management clinic (the one that did the ablation) would not answer any of my questions yesterday. Today I am calling and I am NOT giving up until I have some better answers. If they say we've done every thing to help you then I will say that I want to speak to the Wonderful Doctor that finallly gave in to do the Ablation since he may know of some other way I can get help. I will ask him if a Neurosurgeon might be able to help further along the treatment wheel. I can't accept that this is the way I am going to live forever. Peeing every hour to every 2 hours, cathing a stoma that would love to be left alone for awhile, crossing my legs to stop the phantom peeing feeling, laying in bed 24/7 because it hurts too much to stand up, a 60 minute car ride puts me in a wreck of SEVERE TORTURE for days, and crying all of the time.

I tried to call the after hours oncall service for the pain clinic only to find that they don't have one. Apparently the thousands of patients they see a day dont ever need help after the hours of 9-4PM. And if we do we have to go to an ER. Well those ER's dont have our charts and are not the specialists that even did the procedure. I feel that the doctor that did the procedure should be available if there is an emergency of some sort. PERIOD!

I spoke to my Primary for an hour tonight about my feelings on all of this and he just doesn't know what to do. He says he will follow orders on the pain management clinic at the U of R and prescibe meds to me as they tell him to but as far as getting a specialist that doesn't want to be bothered to help his patients after hours, he did not know what to do or say. He said he was thinking about me before I called him and he thought of where he could send me that may be able to actually do something without giving me such a hassle. He went through all of the major medical institutions that he could possibly think of referring me and he said that they are all going to be this difficult with me and that it's no my fault. I felt a bit better about talking to this man as I have been with him for 4 years and he's seen me go through a lot and got me my disability. I feel a bit better writing this as I usually do. But I am still sad that the procedure did not work and that I have to suffer longer and more severe pain with no clear end. Darn, if I could only take a pill for the pain but it all makes the nerves go crazy and hurt even more.

Positives Ahead even thought the road is still long, I still want to walk down the Isle to my Sister's Wedding in June and I am not done fighting.

I still have the wonderful support you all give to me when I am this down!
I still have the U of R Pain Clinic in a few weeks where we can at least gather info if anything.
I still have the Pelvic Pain Specialist Appoinmtment in January, even though this reallly isn't pelvic pain.
And there's always a possibility that the doctor that did the procedure may be able to shed some light as to what to do next, even if it's sending me onto a Neurosurgeon or a Specialized place for people who can't take any medication. I just have to call and make an appointment to see just HIM and not the others who work for him as they know nothing about what he did to me.

Thank You All for hanging in here with me. I promise when I am on my feet to return the love you all so kindly have given to me!

Kara:angel:

[ChrissySunshine]

Oh Kara, Your post brings tears to my eyes too, I know the soggy pillow thing all too well lately as you know.

Your feelings are your feelings and they are justified. I can't rightfully tell you how you "should" feel, but do want to say that you shouldn't feel that it is your fault that this procedure was not successful. It is not in any way your fault!! You did nothing wrong to cause the failure of this latest treatment!!!

I can soooo relate to the frustrations of having ineffective treatments and doctors who are unwilling to follow up more with their patients! You are much further along on that difficult road than I am, and I KNOW how frustrating (to say the least) that is! You've been through so much, Kara.

I like how you post the "positives" at the bottom of some of your posts. My therapist has recommended that I focus on the positives as well. It is an important part of trying to deal with all this mentally. (Sometimes it is VERY difficult to come up with some positives though, isn't it!!) Add to your list of "positives" that you have a wonderful, caring Primary, and that you have insurance to help defray some of the costs of these very expensive treatments. I'm sure if you think hard you can come up with some more positives....focus on THOSE...the positive things in your life for now.

It is a long and difficult road your on Kara, but your not alone.....you may be "pioneering" for us, as it is a road many of have not walked (yet?), but we're right there beside you supporting you. I thank you so much for sharing with us....

Writing and relating to others is very therapeutic, and I'm here for you as so many others are. If you ever need to write more (Boy, we sure can write when we're distressed, huh??? Are you a fast typist too? hehe, just trying to add a little humor here!), please feel free to PM me, or I'm on myspace http://www.myspace.com/42620225, and/or regular e-mail and Yahoo IM is Chrishab65@yahoo.com. Please write me anytime!

Hang in there girl, my thoughts and prayers are with you! Keep us posted! :grouphug:

[ICNDonna]

Given the fact that the nerve block did give you relief for a little while, you might want to talk to your primary about seeing a neurosurgeon. There just has to be an answer for you.

Sending gentle hugs,
Donna

[ihurttoo]

Given the fact that the nerve block did give you relief for a little while, you might want to talk to your primary about seeing a neurosurgeon. There just has to be an answer for you.

Sending gentle hugs,
Donna
I agree with Donna. It seems as though a neurosurgeon is the next step, since the nerve block worked for a little while. I hope your Dr. will give you a referral and you are able to get in to someone soon. Love, Amy

[aprilmae]

Definitely a neurosurgeon. There has to more people in the world who do not respond to pain medication and I am sure they got help somehow so don't you give up yet - none of us are. You are amazing and I do believe that you are going to be a great source of info for people that come after you. Hang in there!

April

[ICLori]

I agree, I think that the nerve block worked for a little while (just not nearly long enough) and that will be a path to look into - permanent nerve destruction - with a neurosurgeon who really knows what he or she is doing.

The hardest thing to face is when a much hoped-for treatment doesn't work - especially if it gives you relief for a little while and you start to think, "maybe this will work." You can't help but get your hopes up - I go through this all the time, before the CyA (and who knows what the future holds?) - when it doesn't work or stops working, I'm in the same place you are now - crying and wondering what is wrong with me that it doesn't work, wondering if I am crazy, and feeling hopeless and feeling like I don't have the strength to go on. I understand. It's an awful place to be, and even though we are here and wish we could help you, there's really nothing but time that will help you as you grieve this loss.

I totally understand about not wanting to try CyA - there are a lot of risks to this drug besides the childbearing aspect, and the side effects as I was getting used to this drug were nothing short of horrendous.

I think that this nerve thing holds some promise, still. I don't understand why it only gave such short relief, but to me, that still says something - the relief is the first relief you've gotten - it tells me that something is up with the nerves, you know? I'm thinking, surely a neurosurgeon would be able to help you.

Please hang in there - I know you are tired of hanging in there - but there's not any good alternatives to hanging in there, after all....

Blessings,
Lori

[Kara29]

I got in to see Dr. T on Friday at 10:00AM. From there, we go, weather I contiue with him or move on to a Neurosurgeon. I am going with a list of questions and a list of Neurosurgeons that are in Network for my Insurance to Cover. At first they tried to tell me that I had to wait the standard month before talking about the Block but I would not take that for an answer, simply saying, I can not take pain medications so it's important that I not wait a whole month or we'll never get ahold of the pain. The Nurse (who happened to "get it" that I was in pain with no way to get relief, got me in for Friday.

Thank You all for supporting me through all of this hard work. :smile tee

Now all I have to do is wait until Friday. Not as bad as it sure could have been if I had submitted to the original nurse.

Kara:angel:

[Bianchi]

Kara, I have been following your ordeal, I am so glad you're getting in on Friday, hopefully something will come of it, to release you from the pain. You certainly deserve that.
Take care,
Bianchi

[Mel53H]

:grouphug:

[sandramac]

:smile tee Im so glad that they will see you on Friday ! i prey that you will find some relief soon! Love you !
Sandra & family:cat: :cat: :cat:

[waterflow]

Kara, best of luck to you on Friday. I will keep you in my thoughts. :grouphug:

[Babs RN]

Kara,
I'm glad they can get you in this week. Hopefully you can all come together and create a plan that gives you relief and your life back.

Hugs,
Barb:hi:

[akrose]

Kara- How about finding the best neurosurgeon you can find, and go see him, the neurosurgeon knows the nerves that lead to the urethral area- he can shut them off, I know this is the doctor for you. These pain specialists docs- they don't know. I went thru the nerve block and it did nothing. So please find a neurosurgeon, I know he can help.

[Judith56]

Good luck Friday Kara. I am concerned for you though about the how frequently you need to cath yourself. Maybe you might want to discuss with your primary about putting in a Foley to give the stoma a rest till things calm down a bit. This is what my uro and primary have me do when I ever have an infection or in the past when I had problems with my stoma. While I understand that it is not the stoma with the problem the fact that you need to access so often can possibly create problems, so if you had a Foley in, it may just give you and your stoma a respite.

[tabasco32]

WIll pray for you kara. You are in my thoughts a lot. remember what you said positive thoughts even if it's hard sometimes. Think like a tree and be tall because if trees had the mind of a human they would only grow 10 feet tall.

[Emma's Mommy]

Kara i hope you find some help soon.....Dr T is very nice and im sure he will do everything he can to help

[meme]

Its so frustrating when the next treatment doesn't work. Hang in there! I have noticed even in the past few months that more and more IC research is being done. You never know when they will figure out something new to help us.

[marsi4]

Kara I am so sorry about the nerve ablation. Are you feeling the same as before or worse after the procedure. I pray that the Neurosurgeon will be able to help. You desperately need to have this pain removed and I understand your suffering. I am in the same boat as you know. I pray that there is an answer for us and we can rid ourselves of this horrible pain and just have peace and be able to live again. This Neuro Surgeon has got to come through for you. Please don't give up there has to be something that will put an end to your suffering. You have not failed anything, the procedure failed you and I believe you will find peace. Sending you my love

Marsi4

[Kara29]

I printed him out a list of Neurosurgeons in Syracuse and Rochester that fall into my insurance network plan. I also printed all of the meds and procedures I have already tried so he doesn't try to repeat one with me that has a generic or different name. I am at the point now where my pain is a level over 10 and taking any of my pain meds, my daily meds, and the as needed meds, are making it much worse. If I could just take some meds or IV meds even, I would go to the ER but like I said before they would know nothing about me or what was done to me and how to proceed if at all. I am at the pain point of not being able to make it through the day or night let alone the whole weekend. If they could just find something to bring my pain to a level of 7, I could cope until I meet with a Neurosurgeon which could take weeks or months. I am going to use Judith's GREAT advice on the dangers of cathing too often. So I can't take any oral meds, I can't continue to cath the stoma like a maniac much longer, and I need my pain level brought way down!

Thank you all for your suggestions. Judith, I hope he willl take the aspect of the stoma seriously. I wlll even show it to him so he can see what it looks like if need be. Plus I don't want to get a UTI from cathing so darm much.


Love and Hugs!

Kara

[Bessie]

Keeping you in my thoughts and prayers today. Please let us know how your appointment goes.
Octoberfarm

[Emma's Mommy]

Kara i got your message this morning......call me if you need to chat!

[~*~Christine~*~]

I'm so sorry Kara! You've tried everything and the kitchen sink and this disease still won't leave you alone :(

Good luck with the neuro surgeon, I hope he is able to come up with something that will stop the pain.

I've never tried it myself but I've heard about the use of hypnosis to suppress pain signals if that's something you would want to try

[ICLori]

Keeping you in my prayers and hoping the neurosurgeon will work a miracle for you...

Blessings,
Lori

[Emma's Mommy]

hoping for an update soon :-)

[Kara29]

The Pain Management Clinic here can't do much more. The Doctor admitted that he was too afraid to try anything else. I got all of my records regarding the ablation and the correct nerves and will move on to the U of R Clinic. I see them next week. This Doctor would not refer me to a Neurosurgeon. Maybe the Clinic in Rochester will.

Positives for This Week!

A Step in the Right Direction. We know more this week than we did last week and that gives us Power!
I got my records!
I got to talk to my primary about him handling pain meds through U of R.
I got to see my Mom twice and my Granmother Once.
I still also have in Janurary, the Pelvic Pain Specialist that Dr. Moldwin suggested I see.

Well Wishes to you all!

Love and Hugs!

Kara:angel:

[Mel53H]

I like how you write down all the positives. It sometimes is hard to think of the positives when there are so many negatives.:)

[K9wife]

A big (snowy!) internet hug for you from all of your friends here in the local NNY IC Support Group. I know that it's so hard for you to travel to join us at meetings,:hi: but just know we DO care about you! You are a strong woman, and I know that all of what you are going through now must have a purpose we can't quite figure out yet:)

[blackcat25]

Hi,
I'm so sorry that this is all still going on after all of this time. I wish I could help more but all I can say is that you are one of the strongest people I've ever come across and that you are in my thoughts and prayers,
Hugs,
Blackcat:cat:

[Emma's Mommy]

sending you lots of hugs

[ICLori]

Kara, something is bound to work...I think a neurosurgeon would be able to know much more about what nerves are involved, etc. - please don't lose hope!

Blessings,
Lori

[magtech]

Kara-
I just viewed your website, I am so glad that you are able to share your experiences with others I want to tell you how much that it really helped me to read your blog. I sat in tears reading your story-it was at the most very inspiring. When I feel like no one else in the world understands I know that you and others on the IC network really do understand. I have I.C. and have been recently getting DMSO reatments with no success. I just wanted to tell you that you have given me hope, and I thank you for that:angel:

[Ashelliak]

Kara- I am really very sorry to hear that your are having such a hard time. I really hope that you can get to see a neurosurgeon and that they can help you. I really wish that there was something that I could do for you. I wish I could just make it go away. If you need any help with anything or just want to talk, you know how to reach me. Take care and love you Kara. :pray:

[Emma's Mommy]

has anyone talked to Kara at all latley??? she hasn't been online in a few days and i'm worried about her

[Mel53H]

I was wondering that too. She usually checks in most everyday.

[ICNDonna]

Hopefully she's gone somewhere for the weekend. She did post on Friday.

Donna

[ihurttoo]

has anyone talked to Kara at all latley??? she hasn't been online in a few days and i'm worried about her
I spoke with her tonite and she is okay, just very sedated right now and has been in alot of pain. Her Drs are trying to keep her sedated at home to try to sleep through as much of this flare as she can. A (That's why she hasnt been around the last few days.)

Her Mom and husband both have my numbers and know to call me if she has to go into the hospital or something and have always called me when she has been unable to do so, so, no need to worry! I spoke with her Mom again a few days ago and told her they are staying with her for a few days to help take care of her, and then if she isnt better, she said they'd bring her home with them, to help take care of her until this flare passes.

But, dont be alarmed if she isnt on for a while. She is just so medicated right now, that until this passes, she cant stay awake long enough to read or post.
I told her how you all are concerned and she really appreicates your care and concern..

Hugs,
Amy

[aprilmae]

Thanks Amy for the update. I am glad that they are doing something so that at least Kara can get some rest until she gets past this. I know her family is amazing just from what she has posted and I am so glad she has them. Hopefully she is able to rest a lot - she has got to be absolutely exhausted in every way imaginable.

[ICLori]

Thanks Amy for the update - I'm so sorry Kara is still in pain, but I'm glad the doctors are doing their best to medicate her so that she sleeps through the pain. I sure hope this pain will let up soon for her.

Blessings,
Lori

[Moonheart]

That's the best thing for her. Her body will heal much better this way. Hopefully she will feel better soon and get some relief. I hope she finds something that works that she can take or do to at least make life bearable.

I haven't followed her story for very long. What was the reason she can't take things like Morphine and Oxycontin, etc?

[sandramac]

Thanks Amy , I was wondering about Kara ? As I was getting concerned as well! give her my love,Sandra :cat: :cat: :cat:

[Katrina]

Thanks so much for keeping us updated Amy!!! :)

[Emma's Mommy]

Thanks Amy......


i had a frantic IM from her last week and got really worried when i didnt hear anything more from her. I am glad they are at least doing something to help her cope with the pain better.

[ihurttoo]

No problem! By the way, I checked on her again this afternoon, and her period started today, so hopefully she will feel better tomorrow. (You know how her pain is always worse right before then, plus at ovulation!) So, I am hoping that it will bring her some relief. She will be really touched when she is able to come online again and can see the outpouring of love and concern for her. That stuff really means alot to her, so I know she will appreciate it. Hugs, Amy

[Emma's Mommy]

i hope she is feeling better soon!!

[SharonA]

Kara...Hope to hear from you, soon. :kissing: Thanks for all the updates, Amy.

[Freckles]

I hate this disease and what it does to us. I have read your story Kara and you still inspire me with your strength. I will be praying for you and the rest of us. Why is it so hard to get help from the medical community. It seems no one wants us if they can't cure us. I guess it's human egos at work. I'm so sorry you are in such pain. My heart hurts reading you are going through so much. You are in my prayers.
Karen

[Babs RN]

Kara,
Know we are all praying and pulling for you. If you need me, please let me know, k?

Hugs,
Barb:hi:

[Janie Miranda]

Kara,
You continue to be in my thoughts and prayers. I hope we hear that you are feeling better soon.

[Mel53H]

My thoughts continue to be with you, Kara. :grouphug:

[Romans8:28]

Kara,
This post is many many month old. I just found it and I am so sorry for all you have been through. I came in here, and had never seen this section of the forum before but..., many of us on the MSK Meduallary Sponge KIdney website have been talking about, trying to get a name for this procedure. Many of us live with lots of kidney stones, chronic infection and constant pain even when we are not passing stones. Then some of us like me have IC too..., and this procedure sounds pretty appealing...,

could you please update us on how your doing????
I hope they found some answers to help you and you are better now!
a:grouphug:
Shelly

[Kara29]

Shelly,

The whole nerve ablation thing was so long ago and just not a success for my situation. In the end we have found out that in addition to everything that I have gone through I have some additional problems. I have something called Pudendal Nerve Entrapment and Vestibulodynia. I will be having a vestibulectomy in August and if I am still not doing well, they will do Pudendal Nerve Decompression. If you check out the complex case board, you can find many of my recent updates.

Thanks for asking. :) I hope you are well and continue to find lots of information and support. If there are any other specific questions, feel free to ask away.

Hugs,

Kara

[ICNDonna]

This is a very old thread and I am closing it at Kara's request.

Donna